Privacy vs. Identity Rights: A Call for the United States to Adopt the

Case Western Reserve Journal of Case Western Reserve Journal of

International Law International Law

Volume 54 Issue 1 Article 20

2022

Privacy vs. Identity Rights: A Call for the United States to Adopt Privacy vs. Identity Rights: A Call for the United States to Adopt

the United Kingdom’s “Open ID” System for Arti<cial Reproductive the United Kingdom’s “Open ID” System for Arti<cial Reproductive

Technology Technology

Rachel L. Emerson

Follow this and additional works at: https://scholarlycommons.law.case.edu/jil

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Recommended Citation Recommended Citation

Rachel L. Emerson,

Privacy vs. Identity Rights: A Call for the United States to Adopt the United Kingdom’s

“Open ID” System for Arti<cial Reproductive Technology

, 54 Case W. Res. J. Int'l L. 419 (2022)

Available at: https://scholarlycommons.law.case.edu/jil/vol54/iss1/20

This Note is brought to you for free and open access by the Student Journals at Case Western Reserve University

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Case Western Reserve Journal of International Law Vol. 54 (2022)

419

Privacy vs. Identity Rights: A

Call for the United States to

Adopt the United Kingdom’s

“Open ID” System for Artificial

Reproductive Technology

Rachel L. Emerson

Abstract

In a world of readily-available home genetics tests, donor

anonymity can no longer exist. Recognizing this reality, the United

Kingdom has implemented a national controlling system, which

oversees and regulates artificial reproductive technology. The United

States, which currently has no such system, would benefit from

implementing a similar solution. By forming an “Open ID” system,

those individuals who choose to donate genetic material would know

and understand the possibility of a donor-conceived child contacting

them and would have enforceable legal protections in place to shield

them from parental liability or obligations. While the United States

decides what to do about donor anonymity, it is imperative that those

individuals who have donated or plan to donate genetic material

consider the inheritance implications and take measures to protect

themselves through estate planning.

Table of Contents

I. Introduction .............................................................................. 420

II. Understanding History: The Science and Systematic

Approaches to Regulating Donated Genetic Material ....... 424

A. A Brief and Simplified Medical Overview of Artificial Reproductive

Technology ................................................................................. 424

1. Gamete Donation ......................................................................... 425

2. Embryo Donation ........................................................................ 425

B. ART Legislation and Regulations in the United Kingdom and United

States ........................................................................................ 426

1. United Kingdom .......................................................................... 427

2. United States ............................................................................... 427

* J.D. Candidate, Case Western Reserve University School of Law,

Cleveland, Ohio, May 2022. Rachel Emerson received the Journal of

International Law Outstanding Note Award.

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Kingdom’s “Open ID” System for Artificial Reproductive Technology

420

III. Who’s Your Daddy: The Difficulty in Balancing Donor

Anonymity and a Child’s Identity Rights ............................. 429

A. Rights for the Donor-Conceived Child ............................................ 429

1. Medical .......................................................................................... 431

2. Self-Identity ................................................................................... 432

B. Privacy Rights for the Donor ........................................................ 433

1. Anonymity ..................................................................................... 434

2. Privacy .......................................................................................... 435

IV. Lessons from Across the Pond: How a National System

Offers More Benefits than Drawbacks ................................ 436

A. An American Attempt at a Uniform Framework ............................. 437

1. Uniform Parentage Act ................................................................. 437

2. Uniform Probate Code .................................................................. 438

3. The ABA’s Model Act Governing Assisted Reproductive

Technology ................................................................................... 438

B. The United States Needs a HFEA Open ID System ......................... 439

1. Congress’s Commerce Clause Authority ........................................ 439

2. One Potential Problem for Open ID Systems ............................. 442

C. Estate Planning Is Essential to Dealing with the Bigger Problem ...... 443

V. Conclusion .................................................................................. 446

I. Introduction

When Bryce Cleary, a middle-aged doctor from Corvallis, Oregon,

logged on to ancestry.com in 2018, he never imagined finding a child

he genetically fathered—let alone nineteen.

While attending medical

school in 1989,

Cleary was approached by the fertility clinic staff at

Oregon Health & Science University (“OHSU”) to donate sperm.

When

asked why he donated, Cleary answered, “at that time when you’re a

first-year med student, you want to help everybody . . . [t]hat was the

appeal to me. Why not? You’re doing a great thing for a

couple.”

Although Cleary did have some concerns, the idea that his

sperm samples would be shipped to the East Coast and only used for

1. Kyle Swenson, Nineteen Children and Counting, WASH. POST (Sept. 7,

2020, 5:15 PM), https://www.washingtonpost.com/national/sperm-donor-

father-19-children/2020/09/07/97b6f8de-ba65-11ea-8cf5-9c1b8d7f84c6_sto

ry.html [https://perma.cc/X7YE-2CUM].

2. Cleary’s only time outside the city of Corvallis was spent attending OHSU

in Portland, Oregon. Id.

3. Devon Haskins, Oregon Doctor Says His Sperm Was Improperly Used to

Father at Least 17 Children, KGW (Oct. 3, 2019, 7:39 AM), https://www.

kgw.com/article/news/local/corvallis-doctor-sperm-ohsu/283-e8aca73f-aa81

-4f07-bca1-183c25364c80 [perma.cc/D3DN-KHX9].

4. Swenson, supra note 1.

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five pregnancies, with the rest of the samples going to research, eased

his mind.

Roughly 30 years later, after signing up for an ancestry.com

account, Cleary was contacted by two of his donor-conceived

“children.”

This connection led to the introduction of 17 more of his

donor “children,” who had formed a private donor siblings Facebook

group to connect with each other and Cleary.

Cleary has since filed a

lawsuit against OHSU.

After the suit was filed, the University issued

its only public comment to date, stating, “OHSU supports and adheres

to patient privacy laws.”

However, who is really at fault here? The University’s fertility clinic

did not connect Cleary and his donor-conceived children, ancestry.com

did.

Everything that occurred in Cleary’s story is legal in the United

States.

The real question is, should it be?

Bryce Cleary’s story of being found through an at-home genetics

kit and contacted by his donor-conceived children may seem shocking,

5. Id.

6. Id.

7. Id.

8. Cleary’s action against OHSU alleges fraud and intentional infliction of

emotional distress. He has requested $5.25 million in damages. Swenson,

supra note 1.

9. Id.

10. Aimee Green, Oregon Doctor Says His Donated Sperm Was Used to

Father at Least 17 Children, Sues OHSU for $5.25 Million, T

OREGONIAN (Oct. 3, 2019, 1:04 PM), https://www.oregonlive.com/news

/2019/10/oregon-doctor-says-his-donated-sperm-was-used-to-father-at-le

ast-17-children-sues-ohsu-for-525-million.html [https://perma.cc/CNX9-

62WV].

11. Rich Vaughn, Is Sperm Donor Anonymity a Thing of the Past?, I

NT’L

FERTILITY L. GRP. (Oct. 30, 2020, 10:55 AM), https://www.iflg.net/is-

sperm-donor-anonymity-a-thing-of-the-past/ [perma.cc/U42A-UTBX].

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but it is not unusual.

Websites such as ancestry.com

and 23andMe

are just two of the many services that offer at-home genetic testing that

have the ability to connect donors with the child, or children, created

from their donation. In the United States, “[t]he rise of consumer

genetic tests . . . is forcing sperm donation clinics to confront the fact

that it is now virtually impossible to guarantee anonymity to their

clients.”

Many clinics are changing their policies to clarify that the

term “anonymous” donation means only that the clinic will not share

their donor information, not that it cannot be discovered by other

means.

Other clinics are following a more European approach and

allowing an “open-identity donor[s]” (“Open ID”) system.

An Open

ID system allows the donor-conceived child to receive non-identifying

information about their donor at age sixteen and connect with the

donor after they turn eighteen, or sooner, if both parties agree to it.

Cleary’s story demonstrates that there is a gap in the privacy

regulations surrounding artificial reproductive technology (“ART”) and

that United States laws have fallen behind the pace of technology. The

use of ART continues to create issues concerning the reproductive

rights of the intended parents, the identity rights of the resulting

children, and the privacy rights of the gamete donors.

12. See Rachel Weiner, Woman Sues After Learning ‘Anonymous’ Sperm

Donor Was Her Own Fertility Doctor, W

ASH. POST (Nov. 19, 2020, 12:15

PM), https://www.washingtonpost.com/local/legal-issues/fertility-doctor-l

awsuit-michael-kiken/2020/11/19/b938acf2-2908-11eb-92b7-6ef17b3fe3b4_

story.html [https://perma.cc/K287-3KLE]; Sunny Jane Morton, One

Man’s Successful Search for His Sperm-Donor Father, F

AMILYTREE, https:/

/www.familytreemagazine.com/birth-families/sperm-donor-search/ [https://

perma.cc/25L3-NT9D]; Barbara McMahon & Sally Williams, The Boy Who

Went Looking for His Sperm Donor Dad—and Got One Heck of a BIG

Surprise: He Had 25 Brothers and Sisters, D

AILY MAIL UK (Sept. 30, 2020,

5:02 PM), https://www.dailymail.co.uk/femail/article-8790943/The-boy-we

nt-looking-sperm-donor-dad.html [https://perma.cc/8XBR-7WUL].

13. Stephanie Pappas, Genetic Testing and Family Secrets, A

M. PSYCH. ASS’N

(June 2018), https://www.apa.org/monitor/2018/06/cover-genetic-testing

[perma.cc/2ZK9-8D2S].

14. Id.

15. Meghana Keshavan, ‘There’s No Such Thing as Anonymity’: With

Consumer DNA Tests, Sperm Banks Reconsider Long-Held Promises to

Donors, STAT (Sept. 11, 2019), https://www.statnews.com/2019/09/11/c

onsumer-dna-tests-sperm-donor-anonymity/ [perma.cc/QT3D-3BSD].

16. Id.

17. Id.

18. Id.

19. Bruce Hale & Stephen Page, Whose Rights Are They, Anyway?, 12

CITECH L. 8, 8 (2016).

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This Note argues that, as a social policy issue, the United States

must learn from other countries, specifically the United Kingdom, to

provide a unified and sustainable solution that balances the identity

rights of a donor-conceived child and the protection of the privacy

rights of gamete and embryo donors. This Note examines the

implications of donated genetic material

on privacy issues, identity

rights, legal rights, estate planning, and probate litigation. This Notes

also suggests how the United States could benefit from a national

system of regulation as seen in the United Kingdom.

Part II of this Note presents a brief overview of ART that is

applicable to this paper. It provides a general understanding of ART

using donors including gamete donation and embryo donation. It also

provides a brief background on the legal systems that regulate ART in

the United Kingdom and the United States.

Part III explains the necessary balance of the rights of a donor and

the rights of a child, born from ART using donated genetic material. It

also examines how the United Kingdom and United States value these

rights differently in light of customs and societal norms, and how

technological advances destroyed donor anonymity.

Part IV compares the United States’ attempt to create a unified

framework in the Uniform Parentage Act,

Uniform Probate Code,

and American Bar Association state-regulated legislations,

with the

20. While there are many forms of ART, this Note focuses on only those

processes that involve donated genetic material. The Note does not explore

issues of traditional surrogacy which may have some limited application on

the issues proposed, but because it is so rarely used today, has little

implications for this research. Posthumous gamete retrieval is also not

included because those cases typically use a “donor” that is the deceased

biological parent and therefore does not create the same issues of privacy

and inheritance rights as typical gamete or embryo donation. See generally

About Surrogacy: What Is Traditional Surrogacy?, S

URROGATE.COM, https:

//surrogate.com/about-surrogacy/types-of-surrogacy/what-is-traditional-su

rrogacy/#:~:text=Traditional%20surrogacy%20is%20now%20much,as%20t

hey%20grow%20their%20families [https://perma.cc/5PBK-NKS4]; Andrew

Joseph, ‘They Don’t Want His Story to End’: Efforts to Save the

Sperm of the Deceased Come with Heartache and Tough Questions, STAT

(Mar. 13, 2019), https://www.statnews.com/2019/03/13/postmortem-sper

m-retrieval/ [https://perma.cc/CB96-H24].

21. While child support is a relevant factor when analyzing issues of donated

genetic material, it is beyond the scope of this paper and is not discussed

further.

22. U

NIF. PARENTAGE ACT (2017), U.L.A. (2019).

23. U

NIF. PROB. CODE (amended 2020), U.L.A. (2013).

24. ABA Model Act Governing Assisted Reproduction [2019] Resolution, A

BAR ASS’N (Jan. 28, 2019), https://www.americanbar.org/content/dam/

aba/administrative/family_law/committees/art/resolution-111.pdf [http

s://perma.cc/LLP4-EH6L].

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United Kingdom’s Human Fertilisation and Embryology Authority

(“HFEA”) national regulations.

It proposes that Congress’s

Commerce Clause

may allow for a nationally-regulated system of ART

in the United States, and recommends estate planning as an interim

solution to individuals at risk while the United States determines a

legislative solution.

Part V concludes that the states’ legislative attempts will fail

because of the voluntary nature of its systems, and that the United

States would benefit by adopting even a single section of the United

Kingdom’s approach, the Open ID system. Eventually this would create

a unified system for a national donor registry, thus protecting the

privacy of donors and the identity rights of the donor-conceived child.

Ultimately, Part V determines that estate planning in the United States

is essential to dealing with the donor identity crisis of the internet age

until an HFEA-like system can be achieved.

II. Understanding History: The Science and Systematic

Approaches to Regulating Donated Genetic Material

A. A Brief and Simplified Medical Overview of Artificial Reproductive

Technology

Artificial Reproductive Technology refers to the method of creating

a child through means other than sexual intercourse.

ART includes

“all fertility treatments in which both eggs and embryos are handled

outside the body” and may involve the use of donated eggs, donated

sperm, or previously frozen embryos.

This Note examines those

children born as the consequence of ART that included the use of either

donated sperm, eggs, or embryos. While there may be others,

the most

25. The Human Fertilisation and Embryology Authority (Disclosure of Donor

Information) Regulations 2004, SI 2004/1511 (Eng.).

26. U.S.

CONST. art. 1, § 8, cl. 3.

27. Charles P. Kindregan Jr., The Current State of Assisted Reproductive

Law, 34 FAM. ADVOC. 10, 11 (2011).

28. Reproductive Health: Infertility FAQs, C

TR. FOR DISEASE CONTROL &

PREVENTION, https://www.cdc.gov/reproductivehealth/infertility/index.

htm [https://perma.cc/G7BS-222V].

29. On the cutting edge of ART is in vitro gametogenesis (“I.V.G.”). I.V.G.

strips the reproductive process of the need for sperm and egg from a man

and a woman. While only successfully tested on mice, in theory I.V.G.

could allow humans to manufacture their own eggs and sperm outside

their body using only their skin cells to create a child. The implications

of this technology mean that a same-sex couples could create a full genetic

link to their own child. The issue still remains, however, if some genetic

material is used outside of the intended parents, there may be lasting legal

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relevant forms of ART for this Note are gamete donation and embryo

donation.

1. Gamete Donation

Gamete donation is the process of using the sperm or egg of another

person to help the intended parents to have a donor-conceived child.

“Intended parents” refers to the person or persons who are using ART

to create a family and become the child’s parents.

In gamete donation,

either donated sperm or egg is used in combination with the sperm or

egg from the intended parent.

This process preserves a genetic link to

the donor-conceived child from at least one parent.

Donors may be

friends or relatives of the intended parents, introduced through a

reproductive center or donor bank, or may be completely anonymous.

2. Embryo Donation

Embryo donation differs from gamete donation because the

combination of sperm and egg used has no genetic connection to the

intended parents.

Most often, an embryo is created through in vitro

repercussions as to issues over inheritance or privacy barriers in accessing

the child’s genetic ancestry. See generally Debora L. Spar, The Poly-

Parent Households Are Coming, N.Y.

TIMES (Aug. 12, 2020),

https://www.nytimes.com/2020/08/12/opinion/ivg-reproductive-technol

ogy.html?auth=login-facebook [https://perma.cc/G3WC-YJDN].

30. Am. Soc’y for Reprod. Med., Gamete (Eggs and Sperm) and Embryo

Donation Fact Sheet, REPRODUCTIVEFACTS.ORG, https://www.reproduct

ivefacts.org/news-and-publications/patient-fact-sheets-and-booklets/doc

uments/fact-sheets-and-info-booklets/gamete-eggs-and-sperm-and-embry

o-donation/#:~:text=What%20is%20gamete%20or%20embryo,raise%20t

he%20child(ren) [https://perma.cc/NDB3-QDMH].

31. Intended Parent, F

ERTILITYSMARTS (May 26, 2019), https://www.fertilit

ysmarts.com/definition/1652/intended-parent#:~:text=An%20intended

%20parent%20is%20a,parent%20once%20it%20is%20born [https://perm

a.cc/23YW-KS2E].

32. Am. Soc’y for Reprod. Med., supra note 30.

33. Id.

34. It should be noted that while individuals can donate without the use of a

licensed physician, this can lead to increased issues of legal paternity and

parental obligations. See Jhordan C. v. Mary K., 179 Cal. App. 3d 386,

388 (1986) (holding that when no doctor is involved in sperm donation or

in artificial insemination, the sperm was never “provided to a licensed

physician” and therefore the donor fell outside statutory nonpaternity

provisions). See also Am. Soc’y for Repro. Med., supra note 30.

35. Id.

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fertilization (“IVF”),

a process by which an egg is fertilized by sperm

in a test tube outside the body. The embryo is then implanted in the

intended mother.

The intended parents are still able to experience a

biological connection to the donor-conceived child through pregnancy

and birth.

Because the intended parents consequently raise a child to

whom they are not genetically related, embryo donation may sound like

adoption. However, embryo donation is recognized in ART as a

donation because the donated embryo is a property right that is legally

transferred to the intended parents.

When gestation is complete, the

mother bears the donor-conceived child, the intended parents sign the

birth certificate as any other parent would, and there is no need for the

legal transfer of guardianship as in adoption.

B. ART Legislation and Regulations in the United Kingdom and United

States

ART is regulated by state rather than federal law in the United

States

with some help from national agencies and organizations

including the Centers for Disease Control and Prevention (“CDC”);

the American Society for Reproductive Medicine (“ASRM”);

the

Society for Assisted Reproductive Technology (“SART”);

the

36. Many couples who face infertility seek IVF treatments as it gives them

the possibility of a child with their own genetic material. The embryos

are extracted, fertilized, frozen and thawed for different rounds of

implantation. However, a couple will usually harvest and fertilize more

embryos then necessary and has the option to keep the excess or donate

them. Embryo donation is also becoming more popular as it is currently

significantly less expensive than IVF treatments. See e.g., In Vitro

Fertilization (IVF), M

AYO CLINIC, https://www.mayoclinic.org/tests-

procedures/in-vitro-fertilization/about/pac-20384716

[https://perma.cc/TZ5B-7BBY].

37. Id.

38. Am. Soc’y for Reprod. Med., supra note 30.

39. See generally Jenni Millibank, et al., Embryo Donation and Understanding

of Kinship: The Impact of Law and Policy, 32 H

UM. REPROD. 133, 136

(2017).

40. Surrogacy, P

REGNANCY BIRTH & BABY, https://www.pregnancybirthba

by.org.au/surrogacy [https://perma.cc/W8ZZ-SC68].

41. Kindregan Jr., supra note 27, at 11.

42. Alicia Ouellette et al., Lessons Across the Pond: Assisted Reproductive

Technology in the United Kingdom and the United States, 31 AM. J.L. &

MED. 419, 421 (2005).

43. Id.

44. Id.

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American College of Obstetrics and Gynecology (“ACOG”);

the Food

and Drug Administration (“FDA”);

and the Department of Health

and Human Services (“DHHS”).

By contrast, the United Kingdom

uses the HFEA, a national agency that has complete authority over

fertility clinics and human embryo research throughout the country.

1. United Kingdom

Sponsored by the Department of Health and Social Care, the HFEA

regulates the fertility treatment and human embryo research in the

United Kingdom.

The Human Fertilisation and Embryology Act of

1990

and the Human Fertilisation and Embryology Act of 2008

(collectively, the “HFE Act”) statutorily outline the agency’s duties

and roles.

The HFEA’s primary duties include producing a Code of

Practice, licensing and monitoring clinics that perform IVF and donor

insemination, setting standards for clinics and research centers,

providing information to the public, and keeping a register of

information on donors, treatments, and children born through ART.

Not only does the HFE Act grant the HFEA authority to license and

set standards, but the Act also grants HFEA the power to enforce the

requirements.

The HFEA has the authority to “refuse, reevoke, or

suspend a license”

and present violators to the Director of Public

Prosecutions for retribution.

2. United States

In comparison with the United Kingdom, the United States has

been left largely unregulated.

The law that most closely parallels the

HFE Act is the U.S. Fertility Clinic Success Rate and Certification Act

45. Id.

46. Id.

47. Id.

48. Id. at 420–21.

49. H

UM. FERTILIZATION & EMBRYOLOGY AUTH., ANNUAL REPORT AND

ACCOUNTS 2017–18, at 7 (2018).

50. Human Fertilisation and Embryology Act 1990, c. 37, § 8 (UK).

51. Human Fertilisation and Embryology Act 2008, c. 22, § 6 (UK).

52. H

UM. FERTILIZATION & EMBRYOLOGY AUTH., supra note 49, at 7–8.

53. Id. at 8.

54. Human Fertilisation and Embryology Act 1990, c. 37, § 11 (UK).

55. Ouellette et al., supra note 42, at 428.

56. Id.

57. Hale & Page, supra note 19, at 8.

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of 1992 (“FCSRCA”),

which mandates that fertility clinics submit

ART success rate data and describes the responsibilities of the CDC

regarding data reporting and licensing.

Unlike the HFEA in the

United Kingdom, FCSRCA lacks any real authority to enforce the CDC

data reporting and only outlines a voluntary system of licensing that

has never been required.

Individual states have made more headway than the federal

government in attempts to regulate ART.

However, in the state’s

control, states have individual authority to decide whether or not to

adopt a change to ART regulation.

For example, the 2017 changes to

the Uniform Parentage Act (“UPA”)

which necessitated changes to

the intestacy and class-gift provisions in the Uniform Probate Code’s

(“UPC”),

were adopted in its entirety by only 18 states, with other

states adopting separate articles and sections of the UPC.

The

attempts at regulating ART laws through the UPA, the UPC, and the

American Bar Association (“ABA”) regulations

will be discussed more

fully in Part IV. Because no effective regulations have been

implemented at the federal level, many state legislatures have opted to

address ART issues on a case-by-case basis with little to no precedent.

This disjointed national response to ART causes more problems than

it solves.

This lack of a unified system of regulation has earned the United

States the label of the “Wild West of the fertility industry.”

The

Director of the Division of Medical Ethics at New York University’s

School of Medicine, Arthur L. Caplan, posits that one reason for the

58. Fertility Clinic Success Rate and Certification Act of 1992, 42 U.S.C. §§

263(a)(1)–(7) (2000).

59. Id.

60. Ouellette et al., supra note 42, at 422–23.

61. Id. at 423.

62. Id. at 432.

63. U

NIF. PARENTAGE ACT (amended 2017) (UNIF. L. COMM’N 1973).

64. U

NIF. PROB. CODE § 2-119(c) (amended 2019) (UNIF. L. COMM’N).

65. Guide to Uniform and Model Acts 2019–2020, U

NIF. L. COMM’N, http://

leg5.state.va.us/User_db/frmView.aspx?ViewId=5641&s=32 [https://per

ma.cc/5A7R-7DHD].

66. M

ODEL ACT GOVERNING ASSISTED REPRODUCTION [2019] RESOLUTION (AM.

BAR ASS’N 2019).

67. Kindregan Jr., supra note 27, at 11.

68. Michael Ollove, States Not Eager to Regulate Fertility Industry, P

CHARITABLE TRUSTS (Mar. 18, 2015), https://www.pewtrusts.org/en/res

earch-and-analysis/blogs/stateline/2015/3/18/states-not-eager-to-regulat

e-fertility-industry [https://perma.cc/N9XC-VZ3D].

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lack of regulation is because ART runs into political controversy in the

U.S.

ART “touches on abortion and also the creation of embryos,

which politicians run away from because too many people still disagree

about the right to use reproductive technologies,” including how much

one should pay and ultimately who should pay.

The current

“piecemeal approach” for ART in the United States relies on

professional guidelines and the overall regulations of the medical

practice.

III. Who’s Your Daddy: The Difficulty in Balancing

Donor Anonymity and a Child’s Identity Rights

The difference in regulations is just one of the many ways to

compare the United Kingdom’s and United States’ approaches to ART.

Another glaring distinction deals with how each nation values and

balances the rights involved in ART. The balance between the

reproductive rights of the intended parents, the identity rights of the

donor-conceived child, and the privacy rights of the gamete donor is

extremely delicate.

The United Kingdom sees aspects of these rights

as positive rights, as seen in the national requirement of gamete donor

records.

Alternatively, some rights are seen as negative rights, such as

the fundamental right to reproduce without government interference in

the United States.

Exploring the balance of these rights illuminates

another key difference in the United Kingdom’s and United States’

respective approaches to regulating ART.

A. Rights for the Donor-Conceived Child

The rights of a donor-conceived child to know their origin are

growing in much of Western Europe.

Both the 1989 U.N. Convention

on the Rights of the Child (“CRC”)

and the Convention for the

Protection of Human Rights and Fundamental Freedoms (“European

69. Id.

70. Id.

71. Lucy Frith, Assisted Reproductive Technology in the USA: Is More

Regulation Needed?, 29 R

EPRO. BIOMEDICINE 516, 516 (2014).

72. Hale & Page, supra note 19, at 9.

73. Id.

74. Id. at 9.

75. Id. at 9.

76. Convention on the Rights of the Child art. 8, Nov. 20, 1989, 28 I.L.M.

1456, 1577 U.N.T.S 3.

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Convention on Human Rights”),

through decisions by the European

Court of Human Rights (“ECHR”),

declare the rights of a child to

know their origins.

Specifically, Article 8 of the CRC provides: “States

Parties undertake to respect the right of the child to preserve his or her

identity, including nationality, name and family relations as recognized

by law without unlawful interference.”

In addition, Article 8 of the

European Convention on Human Rights states:

Everyone has the right to respect for his private and family life,

his home and his correspondence. There shall be no interference

by a public authority with the exercise of this right except such

as is in accordance with the law and is necessary in a democratic

society in the interests of national security, public safety or the

economic wellbeing of the country, for the prevention of disorder

or crime, for the protection of health or morals, or for the

protection of the rights and freedoms of others.

However, this right to know one’s origin does not necessarily

include the right to know one’s natural genetic parents. For example,

in Odièvre v. France, the applicant was unable to obtain identifying

information about her biological mother.

She claimed Article 8

permitted her to seek an order for the release of information about her

birth.

The ECHR held that, although Article 8 does protect a right to

identity and personal development, “the preservation of mental

stability is in that context an indispensable precondition to effective

enjoyment of the right to respect for private life.”

The Court

concluded that because the applicant was already given access to non-

identifying information about her biological parent, Article 8 was not

violated.

77. Convention for the Protection of Human Rights and Fundamental

Freedoms art. 8, Nov. 4, 1950, Europ. T.S. No. 5, 213 U.N.T.S. 221.

78. Hale & Page, supra note 19, at 8.

79. Id. at 8–9.

80. Convention on the Rights of the Child art. 8, Nov. 20, 1989, 28 I.L.M.

1456, 1577 U.N.T.S 3.

81. Convention for the Protection of Human Rights and Fundamental

Freedoms art. 8, Nov. 4, 1950, Europ. T.S. No. 5, 213 U.N.T.S. 221.

82. Odièvre v. France [GC], No. 42326/98, ¶ 24 (Feb. 13, 2003), https://hudoc

.echr.coe.int/eng#{%22itemid%22:[%22001-60935%22]} [https://perma.cc/

3MW8-9NA4].

83. Id. ¶ 25.

84. Id. ¶ 29.

85. Id. ¶ 49.

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In the United Kingdom specifically, children conceived through

gamete donation have “statutory rights to access information about

their donor.”

The HFEA Disclosure of Donor Information Regulations

came into force on July 1, 2004.

The Regulations, made under the

Human Fertilisation and Embryology Act of 1990,

prohibit gamete

donor anonymity.

Donors enter both non-identifying information,

such as the donor’s physical description, year and country of birth, and

marital status, and identifying information, such as the donor’s name,

birth date, and last known address, into the HFEA registry.

A donor-conceived child in the UK can apply for their donor’s non-

identifying information at age sixteen and identifying information at

age eighteen.

The requirement for non-identifying information is based

on a donor-conceived child’s right to know their own medical history,

whereas the identifying information is based in the belief that knowing

one’s origin is crucial to forming a healthy self-identity.

1. Medical

The right to know these non-identifying and identifying factors

comes from the belief that “genetic origin is at least part of the

individual’s identity.”

However, these non-identifying factors may

provide more value to the individual, as they contribute to

understanding their medical history and provide insight into their

future health.

Before undergoing any medical procedure or assessment, one of the

most common questions asked by physicians is “What is your family’s

86. Bethan Cleal & Natalie Gamble, Mitochondrial Donation in the United

Kingdom, 12 S

CITECH L. 18, 21 (2016).

87. The Human Fertilisation and Embryology Authority (Disclosure of Donor

Information) Regulations 2004, SI 2004/1511, art. 1, ¶ 1 (Eng.).

88. Id. at art. 1.

89. Id. at art. 2.

90. Id.

91. Preparing to Access Non-Identifying Information About Your Donor and

Donor-Conceived Genetic Sibling(s), H

UM. FERTILISATION & EMBRYOLOGY

AUTH. (Oct. 8, 2021), https://www.hfea.gov.uk/donation/donors/informat

ion-for-past-applicants/preparing-to-access-non-identifying-information-ab

out-your-donor-and-donor-conceived-genetic-sibling-s/ [https://perma.cc/

X3GN-4ZBR].

92. An Ravelingien et al., Open-Identity Sperm Donation: How Does Offering

Donor-Identifying Information Relate to Donor-Conceived Offspring’s

Wishes and Needs?, 12 J.

BIOETHICAL INQUIRY 503, 507 (Sept. 12, 2015),

https://pubmed.ncbi.nlm.nih.gov/24996630/

[https://perma.cc/KL83-KYR3].

93. Hale & Page, supra note 19, at 9.

94. Id.

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medical history?”

It is generally accepted that family medical history

can provide information to assess a person’s vulnerability to common

diseases, provide adequate screening for those diseases, and contribute

to early treatment options.

The requirement to disclose non-

identifying information was created to ensure donor-conceived children

received all the information needed to lead a healthy life.

However, if a donor-conceived child does not have access to the

genetic information of their donor parents, the child is not without

options for seeking substantial relevant information. The parents who

raise the child will have information on the family’s lifestyle, culture,

and environmental factors that can supplement the child’s medical

history.

In addition, the donor-conceived child may also undergo their

own genetic testing to fill in the gaps left by their genetic donors. While

the disclosure requirement is not the only option for acquiring

information on a donor-conceived child’s medical history, it is certainly

the easiest option.

2. Self-Identity

The need for the release of identifying factors to donor-conceived

children comes from a belief that genetics can play a role in the creation

of one’s self-identity.

100

While genetics can be a valuable tool in

understanding one’s medical history and future health, there is little

evidence that it can create or fulfil one’s self-identity.

101

The

fundamental moral right to know one’s genetic origins is often assumed

by international law instruments such as the CRC

102

and the European

95. See Family Health History, CTRS. FOR DISEASE CONTROL & PREVENTION

https://www.cdc.gov/genomics/famhistory/famhist_basics.htm

[https://perma.cc/56GL-AALT]; Why Is It Important to Know My

Family Health History?, U.S.

NAT’L LIBR. MED.: MEDLINEPLUS

https://medlineplus.gov/genetics/understanding/inheritance/familyhisto

ry/ [https://perma.cc/22KS-R8TA].

96. Inmaculada De Melo-Martín, The Ethics of Anonymous Gamete Donation:

Is There a Right to Know One’s Genetic Origins?, 44 H

ASTINGS CTR. REP.

28, 30–31 (2014).

97. See id.

98. Id. at 31.

99. See Mohammad Reza Sadeghi, Coming Soon: Disclosing the Identity of

Donors by Genealogical Tests of Donor Offspring, 20 J.

REPROD. &

INFERTILITY 119, 119 (2019), https://www.ncbi.nlm.nih.gov/pmc/article

s/PMC6670264/ [https://perma.cc/L4GB-SPBX].

100. Hale & Page, supra note 19, at 9.

101. Id. at 9.

102. G.A. Res. 44/25 (VII), Convention on the Rights of the Child (Nov. 20, 1989).

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Convention on Human Rights,

103

but this moral right remains largely

unjustified.

104

Those who support this position argue that knowing one’s genetic

origin can explain physical characteristics, talents, and interests, which

all feed into self-identity.

105

University of Virginia law professor, Naomi

Cahn, is one such supporter.

106

Cahn believes the United States “need[s]

more regulation of assisted reproductive technologies to protect the

rights of children,” which should include donor-conceived children

having the right to full medical and ethnical information, including

country of origin, about their genetic parents.

107

While access to one’s genetic parents can help create a sense of

belonging and connection with the past, there is little evidence to show

that donor-conceived children as a group suffer “genealogical

bewilderment” that impedes them from creating healthy identities

without this information.

108

With no real evidence that knowledge about

one’s genetic origin is necessary for a healthy life or successful sense of

self, the question becomes whether these rights supersede that of

donors’ rights of autonomy.

B. Privacy Rights for the Donor

As a member of the United Nations, the United States has signed,

but not ratified, the CRC, which spells out the right to know one’s

origin.

109

The failure to ratify the CRC may stem, in part, from strongly

held beliefs in the right to privacy, autonomy, and a free market.

110

The

first sperm bank in the U.S. was created in 1952 in Iowa.

111

At the time,

only 28% of the nation approved of artificial insemination.

112

Back then,

103. Convention for the Protection of Human Rights and Fundamental

Freedoms art. 8, Nov. 4, 1950, Europ. T.S. No. 5, 213 U.N.T.S. 221.

104. De Melo-Martín, supra note 96, at 29–30.

105. See Ravelingien et al., supra note 92, at 507.

106. Ollove, supra note 68.

107. Id.

108. Naomi R. Cahn, T

EST TUBE FAMILIES: WHY THE FERTILITY MARKET NEEDS

LEGAL REGULATION 126 (2009).

109. G.A. Res. 44/25 (VII), supra note 102, at art. 8; see also Hale & Page,

supra note 19, at 9.

110. L

UISA BLANCHFIELD, CONG. RSCH. SERV., R40484, THE UNITED NATIONS

CONVENTION ON THE RIGHTS OF THE CHILD 7, 9–10, 12, 14 (2015).

111. Alexis C. Madrigal, The Surprising Birthplace of the First Sperm Bank,

HE ATLANTIC (Apr. 28, 2014), https://www.theatlantic.com/technology/

archive/2014/04/how-the-first-sperm-bank-began/361288/ [https://perma.

cc/DQ9S-ML5F].

112. Id.

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the idea of ART in humans elicited fear and skepticism.

113

In addition

to fear, infertility carried a stigma and shame that created the need for

secrecy in sperm donation.

114

In 2015, the estimated number of donor-conceived children who are

born in the United States each year is between 30,000–60,000 from

sperm donation and over 8,000 from egg donation.

115

The stigma and

shame of donation have slowly been replaced by millions of so-called

“test tube babies.”

116

In recent years, gamete donation has generated

billions of dollars per year.

117

1. Anonymity

While the concept of anonymity has been a key part of gamete

donation since its inception, that may no longer be possible.

118

The

increase of consumer genetic tests such as ancestry.com and 23andMe

is forcing sperm donation clinics in the U.S. to reconsider their

anonymity policies.

119

This change has transformed the term

“anonymous” donation, which now means the bank or clinic will not

share donor information. However, with the help of the internet and

genetic testing, a donor-conceived child can find their donor “parent”

all on their own.

120

While ART continues to make technological advances at a rapid

pace, regulations and laws concerning ART have seen very limited

improvements.

121

The change to an Open ID system in the United

Kingdom, specifically, has created a deficit in donors, who now fear

losing their anonymity, incurring liability for child support, and other

complications.

122

The unique issue for the United States is that there have been

decades of donors like Bryce Cleary, who relied heavily on the

113. Id.

114. Keshavan, supra note 15.

115. Maya Sabatello, Regulating Gamete Donation in the U.S.: Ethical, Legal

and Social Implications, 4(3) L

AWS 325, 354 (2015).

116. Test-Tube Baby, M

ERRIAM-WEBSTER (11th ed. 2020) (“[A] child produced

from an egg that was fertilized outside of a woman’s body and then put

back into the woman’s body to finish developing.”).

117. Michael J. Malinowski, A Law-Policy Proposal to Know Where Babies

Come from During the Reproduction Revolution, 9 J.

GENDER, RACE &

JUST. 549, 549 (2006).

118. Keshavan, supra note 15.

119. Id.

120. Id.

121. Kindregan Jr., supra note 27, at 11.

122. Hale & Page, supra note 19, at 9.

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anonymity of their donations and never imagined the child created with

their genetic material would locate, let alone contact, them.

123

Because

of the lack of uniform regulations and policies, some clinics in the

United States have created contracts that explicitly state that donors

are not legally the father or mother and have no rights or obligations

towards the offspring; others have not.

124

However, even when a

contract is created between two parties, allegedly absolving the donor

of parental liability, courts have held those contracts as unenforceable

because it is impossible to contract out of parental obligations.

125

With

autonomy on its way out and unenforceable contracts failing to protect

donors from parental liability, some clinics may be opting for an Open

ID system similar to the United Kingdom.

126

This lack of uniform

regulation may be unsettling for those donors who were promised

anonymity and now learn that it can no longer be guaranteed.

127

2. Privacy

This loss of anonymity does not, however, necessitate a loss of

privacy for those who have donated or plan to donate genetic material

in the future. While maintaining anonymity may have prevented the

disclosure of a name or identity in the past, the right of privacy may

continue to protect those individuals who have donated from the

intervention of others.

128

The booming sperm donation industry survives

off donors like Bryce Cleary, who were promised impossible anonymity,

but whose privacy may still be protected.

Many of these men donated when they were young and, after

“experience[ing] fatherhood in real life,” wanted nothing to do with

123. Swenson, supra note 1.

124. Keshavan, supra note 15.

125. A recent Texas appellate court found a known sperm donor to be the legal

father of the donor conceived child and awarded him custody rights and

held him liable for child support. See In re P.S., 505 S.W.3d 106, 109

(Tex. App. 2016).

126. Keshavan, supra note 15; see also Ashley Fetters, Finding the Lost

Generation of Sperm Donors, T

HE ATLANTIC (May 18, 2020), https://www.

theatlantic.com/family/archive/2018/05/sperm-donation-anonymous/56058

8/ [https://perma.cc/8X4T-QMDE] (“[I]n 2011, Washington became the first

state to enact legislation making [Open ID system] the default.”).

127. Ian Sample, Teenager Finds Sperm Donor Dad on Internet, T

GUARDIAN (Nov. 2, 2005, 8:42 PM), https://www.theguardian.com/science

/2005/nov/03/genetics.news [https://perma.cc/RB5M-HXYM].

128. Richard Vaughn, Is Sperm Donor Anonymity a Thing of the Past?, I

NT’L

FERTILITY L. GRP. (Oct. 30, 2020, 10:55 AM), https://www.iflg.net/is-sper

m-donor-anonymity-a-thing-of-the-past/ [https://perma.cc/7EAZ-BMRP].

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their donor-conceived children.

129

Erin Jackson, founder of We Are

Donor Conceived,

130

knows this all too well. After reaching out to her

biological father and essentially receiving a “get lost” response, Jackson

decided to create a support group and resource page for those like her.

131

Founded in 2016, We Are Donor Conceived now has over 2,000

members.

132

Its website hosts guides, personal testimonies, and videos

for those donor-conceived children struggling to make sense of their

identity with or without their “biological parent.”

133

While some

reconnection stories may end with a cease-and-desist letter,

134

there are

other stories like that of Peter Ellenstein who has met 20 of his donor-

conceived children and regularly enjoys family dinners and traveling

with them.

135

In either case, whether open to a relationship with the donor-

conceived child or not, this Note contends that a donor should have a

right to privacy.

IV. Lessons from Across the Pond: How a National

System Offers More Benefits than Drawbacks

There are many lessons the United States can learn from the United

Kingdom, specifically regarding a national uniform system with actual

authority to regulate ART. A national system, like the HFEA, would

allow the United States to keep a registry of donors and donor-

129. Zoe Heller, Op-Ed: My Dad the Sperm Donor Wanted to Remain

Anonymous, L.A. T

IMES (Jan. 26, 2020, 12:01 AM), https://www.latimes.co

m/opinion/story/2020-01-26/opinion-sperm-donor-dad-offspring [https://per

ma.cc/X8Z6-SQEK].

130. W

E ARE DONOR CONCEIVED, https://www.wearedonorconceived.com/

[https://perma.cc/4LCU-3JWB].

131. Elizabeth Chuck, From Sperm Donor to “Dad”: When Strangers with

Shared DNA Become a Family, NBC

NEWS (Nov. 17, 2019, 11:56 AM),

https://www.nbcnews.com/news/us-news/sperm-donor-dad-when-strang

ers-shared-dna-become-family-n937366 [https://perma.cc/DV9J-LSWX].

132. W

E ARE DONOR CONCEIVED, 2020 We Are Donor Conceived Survey

Report (Sept. 17, 2020), https://www.wearedonorconceived.com/2020-

survey-top/2020-we-are-donor-conceived-survey/ [https://perma.cc/44U

L-QZUZ].

133. W

E ARE DONOR CONCEIVED, supra note 130.

134. Jacqueline Mroz, A Mother Learns the Identity of Her Child’s

Grandmother. A Sperm Bank Threatens to Sue, N.Y.

TIMES (Feb. 16, 2019,

5:00 AM), https://www.nytimes.com/2019/02/16/health/sperm-donation-

dna-testing.html [https://perma.cc/9SYC-4CBF].

135. Chuck, supra note 131.

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conceived children.

136

The donor-conceived child would be able to apply

for their donor’s non-identifying information at age sixteen and

identifying information after age eighteen. This system would protect

both the child’s identity rights, and the donor’s privacy rights, as the

registry could track those donors who desire to be contacted and those

who prefer to remain uninvolved.

The UPA, UPC, and ABA have offered solutions and resources to

create a unified framework for the United States,

137

but without any

federal authority requiring the states to enact and enforce them, they

remain only suggestions. The United States should follow the system of

HFEA and have a single authority that creates a unified donor registry,

regulates licensing, and sets standards in order to create an Open ID

system for the United States. While this is no quick fix for the United

States, one solution for those individuals who donated genetic material

under the false pretenses of anonymity is estate planning.

138

A. An American Attempt at a Uniform Framework

The three most recent attempts to regulate a unified approach to

ART in the United States are seen in the 2017 UPA updates,

139

2019

UPC revisions,

140

and the adoption of the ABA Model Act Governing

Assisted Reproduction 2019 update.

141

1. Uniform Parentage Act

The Uniform Parentage Act of 1973 was enacted to “provide a

comprehensive scheme for addressing issues of paternity, embryo

ownership, and genetic testing.”

142

With changes in cultural views and

technology, the UPA has been updated several times.

143

Its last update

in 2017 included a new section that recognizes an intended parent as a

legal parent of a donor-conceived child and provides that a donor is not

136. The Human Fertilisation and Embryology Authority (Disclosure of Donor

Information) Regulations 2004, SI 2004/151, art. 2, ¶ 1 (Eng.).

137. U

NIF. PARENTAGE ACT (2017), U.L.A. (2019); UNIF. PROB. CODE (amended

2019) (U

NIF. L. COMM’N); MODEL ACT GOVERNING ASSISTED REPRODUCTION

[2019] RESOLUTION (AM. BAR ASS’N 2019).

138. Alexis S. Gettier & Margaret St. John Meehan, The “ART” of Estate

Planning: Assisted Reproductive Technology Issues to Consider, 43 T

MGMT. ESTS., GIFTS & TRS. J. 188, 191–92 (2018).

139. U

NIF. PARENTAGE ACT (2017), U.L.A. (2019).

140. U

NIF. PROB. CODE (amended 2019) (UNIF. L. COMM’N).

141. M

ODEL ACT GOVERNING ASSISTED REPRODUCTION [2019] RESOLUTION

M. BAR ASS’N 2019).

142. Jenna Casolo et al., Assisted Reproductive Technologies, 20

GEO. J.

GENDER & L. 313, 318 (2019).

143. U

NIF. PARENTAGE ACT (2017), U.L.A. (2019).

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a parent of a child conceived by means of ART.

144

However, only six

states have enacted this update.

145

Eleven other states have enacted the

2002 UPA, either in part or whole, and have not yet conformed to the

latest update.

146

It is unclear why so few states have enacted the UPA,

but there is evidence that most states do not see this shift in ART and

estate planning for the threat that it is and refuse to acknowledge the

need for the changes or adoption of the UPA.

147

2. Uniform Probate Code

The Uniform Probate Code added Section 2-120 and Section 2-121

in 2008.

148

These sections were created to address issues stemming from

assignment of parenting and inheritance issues related to ARTs.

149

The

promulgation of the 2017 UPA created a need for a further round of

revisions to the UPC’s intestate and class-gift provisions, including a

new definition for the term “heir.”

150

Many of the provisions of the UPA

are incorporated by reference into the UPC.

151

This incorporation

simplifies the code and gives a more national consensus for those States

that choose to adopt either the UPC or UPA.

152

3. The ABA’s Model Act Governing Assisted Reproductive

Technology

Finally, the American Bar Association adopted the Model Act

Governing Assisted Reproductive Technology (“Model Act”) to address

many of the legal issues left unresolved by the UPA or UPC.

153

Most

144. See id. § 609.

145. As of November 2021, Rhode Island, Connecticut, Maine, California,

Vermont, and Washington are the only States to enact the UPA 2017

update. Parentage Act, U

NIF. L. COMM’N, https://www.uniformlaws.org

/committees/community-home?CommunityKey=c4f37d2d-4d20-4be0-82

56-22dd73af068f [https://perma.cc/H7EL-8RRJ].

146. Illinois, Maine, New Mexico, Alabama, Oklahoma, North Dakota, Utah,

Delaware, Wyoming, Washington, and Texas enacted the 2002 UPA.

Parentage Act (2002), U

NIF. L. COMM’N, https://www.uniformlaws.org/

committees/community-home?CommunityKey=5d5c48d6-623f-4d01-999

4-6933ca8af315 [https://perma.cc/T3X8-MWX6].

147. See, e.g., Memorandum from Dan L. Miller, Pennsylvania House Rep., on H.

B. 115, Pennsylvania House Rep. (Dec. 1, 2020) (on file with the Pennsylvania

House of Representatives).

148. U

NIF. PROB. CODE §§ 2-120, 2-121 (amended 2019) (UNIF. L. COMM’N).

149. Casolo et al., supra note 142 at 318–19.

150. U

NIF. PROB. CODE § 1-201(20) (amended 2019) (UNIF. L. COMM’N).

151. Id.

152. Id. §§ 2-115, 2-118–121, 2-705, 3-703, 3-705.

153. Casolo et al., supra note 142, at 318.

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notably, the Model Act clarified the legal interest of the parties involved

in ART procedures.

154

The newly ratified 2019 Model Act is “the prime

example of best practices and requirements for the safety of all the

participants in an assisted reproduction arrangement” because it

creates a flexible framework for regulating the legal rights, obligations,

and protections of the various stakeholders involved in ART.

155

These three examples show that the United States can sacrifice

some state-level autonomy for the benefit of clarification in the complex

realm of ART. While states have the freedom to handle issues of ART

in almost any way they see fit, the UPA, UPC, and ABA provide useful

resources as a “starting point for national consensus.”

156

While the

United States has not yet conformed to the United Kingdom’s HFEA

model, it is one step closer to a uniform framework for ART.

B. The United States Needs a HFEA Open ID System

As donor anonymity becomes a thing of the past,

157

the United

States should adopt similar Open ID regulations to the United

Kingdom. This system would allow the donor-conceived child to access

medical characteristics of the donor parent(s) before their eighteenth

birthday and have the option to know the identity of the donor

parent(s) after their eighteenth birthday.

158

An Open ID system would

also promote some sense of donor privacy and reduce the shock and

inheritance questions seen in the Bryce Cleary story.

159

In an Open ID

system, those individuals who choose to donate would know and

understand the possibility of a donor-conceived child contacting them,

and would have enforceable legal protections in place to shield from

parental liability or obligations.

1. Congress’s Commerce Clause Authority

A national solution sounds simple but would require the United

States to adopt a federal system similar to the HFEA where a register

154. Id.

155. Rich Vaughn, American Bar Association Ratifies 2019 ART Model Act,

NT’L FERTILITY L. GRP. (Jan. 29, 2019, 8:43 AM), https://www.iflg.net/a

merican-bar-association-ratifies-2019-art-model-act/#:~:text=The%20AB

A%20began%20work%20on,the%20field%20of%20ART%20law [https://

perma.cc/NL3Y-8LR2].

156. Casolo et al., supra note 142, at 318.

157. Keshavan, supra note 15.

158. Andrew Hellman & Professor Glenn Cohen, Prohibiting Sperm Donor

Anonymity in the US and Possible Effects on Recruitment and

Compensation, B

IONEWS (Apr. 3, 2017), https://www.bionews.org.uk/pag

e_95954 [https://perma.cc/4W36-2NDH].

159. See infra Part V; see also Swenson, supra note 1.

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of information can be kept and protected.

160

While the UPA, UPC, and

ABA Model Act propose optional changes, the individual states control

whether to adopt the systems proposed.

161

While the states have pioneered regulating ART in the United

States, a system of federal regulation is not inconceivable. The Supreme

Court continues to uphold the right to procreate or not procreate as a

fundamental right.

162

This fundamental right, first seen in Roe v.

Wade,

163

was again upheld in Planned Parenthood v. Casey

164

nineteen

years later. This fundamental right to procreate is federally protected,

and the ART clinics which buy and sell biological material, often

crossing state lines, should be federally regulated. The strongest

justification for federal regulation of this area is the Commerce Clause,

which gives Congress the power to regulate matters of interstate

commerce.

165

However, Congress’s Commerce Clause powers are limited.

166

Congress must include explicit findings that the activity being

regulated “substantially affect[s]” interstate commerce.

167

Under this

line of thinking, Wickard v. Filburn

168

provides a rationale to regulate

ART nationally under the Commerce Clause. Wickard v. Filburn

introduced the “cumulative effect” theory, which expanded the

Commerce Clause power.

169

The cumulative effect theory provides that

Congress may regulate not only individual acts, but an entire class of

acts that have a substantial economic effect on interstate commerce.

170

The ART industry already heavily implicates interstate commerce with

intended parents traveling all over the world to find the perfect donor

even shipping samples across state lines.

171

There is no reason why the

160. See HUM. FERTILIZATION & EMBRYOLOGY AUTH., supra note 49.

161. See supra Section IV.A.

162. Meena Lal, The Role of the Federal Government in Assisted Reproductive

Technologies, 13 S

ANTA CLARA HIGH TECH. L.J. 517, 537 (1997).

163. 410 U.S. 113 (1973).

164. 505 U.S. 833 (1992).

165. U.S.

CONST. art. 1, § 8, cl. 3.

166. United States v. Lopez, 514 U.S. 549, 559 (1995).

167. Id.

168. 317 U.S. 111,120 (1942).

169. Id. at 125.

170. Lal, supra note 162, at 538.

171. Ellen S. Fischer, The ‘Wild West’ of Medicine: An Argument for Adopting

the United Kingdom’s ‘HFEA’ Framework, to Improve the Market for

Assisted Reproduction in the United States, 39

NW. J. INT’L L. & BUS. 201,

222 (2019).

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United States federal government could not use the Commerce Clause

to regulate ART and create a national system like the HFEA.

The role of commerce in the buying and selling of human genetic

material is one of the most controversial topics in modern health

policy.

172

One example of the Commerce Clause power used

appropriately is seen in Congress’s National Organ Transplant Act in

1984.

173

In Title III, the Act indicates, “it shall be unlawful for any

person to knowingly acquire, receive, or otherwise transfer any human

organ for valuable consideration for use in human transplantation if the

transfer affects interstate commerce.”

174

The term “human organ”

means the human “kidney, liver, heart, lung, pancreas, bone marrow,

cornea, eye, bone, and skin or any subpart thereof and any other human

organ specified by the Secretary of Health and Human Services by

regulation.”

175

The definition of “human organ” includes those organs

also derived in any subpart thereof a fetus.

176

Consequently, it is not a

stretch to think of a frozen embryo or donated genetic material as part

of the “human organ” definition, transfer of which is barred by

Congress’s National Organ Transplant Act.

While the United States does not currently have unified national

regulations for ART, the American Society for Reproductive Medicine

argues ART is one of the most highly regulated medical practices in

the U.S.

177

The ASRM was founded in 1944 as an organization purely

dedicated to the development of the science of reproductive medicine.

178

The ASRM believes that (1) state regulations, such as medical

licensing, continuing medical education, and disciplinary requirements;

(2) federal regulations, such as the Fertility Clinic Success Rate and

Certification Act (“FCSRCA”), mandatory reporting to the Centers for

Disease Control (“CDC”), and Food and Drug Administration (“FDA”)

regulation of drugs; and (3) professional self-regulations, such as the

“professional societies [of] ASRM and SART” (Society for Assisted

Reproductive Technology) are more than enough to “develop ethical

and practical guidelines” for ART.

179

Unfortunately, this thinking is

172. B. Björkman & S. O. Hansson, Bodily Rights and Property Rights, 32 J.

MED. ETHICS 209, 209 (2006).

173. 42 U.S.C. § 273.

174. 42 U.S.C. § 274(e).

175. Id.

176. Id.

177. A

M. SOC’Y FOR REPROD. MED., OVERSIGHT OF ASSISTED REPRODUCTIVE

TECHNOLOGY 2 (2010).

178. History of ASRM, A

M. SOC’Y FOR REPROD. MED., https://www.asrm.or

g/about-us/history-of-asrm/ [https://perma.cc/6L6C-G5J3].

179. Id. at 5–6.

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incorrect. While the United States may have a plethora of regulations,

its implementation is ineffective, as those who violate these regulations,

standards, and guidelines are rarely sanctioned.

180

An American HFEA system would allow for a singular authority to

create uniform regulations throughout the country and see that they

are upheld. It would allow for the creation of a unified donor registry

and set the standards of creating an Open ID system for the United

States, thus removing any ambiguity from the process and solving the

issue of donor-conceived children finding their genetic parents on the

internet. A unified system has been clearly demonstrated to be

successful in the United Kingdom and therefore presents a successful

option for the United States.

2. One Potential Problem for Open ID Systems

A conceivable consequence of an Open ID system is a decrease in

donor participation, as seen in the United Kingdom.

181

Harvard Law

School bioethics professor I. Glenn Cohen conducted a study in 2016

which revealed about 29% of potential sperm donors said they would

“refuse donating if their names were put on a registry.”

182

The study

suggested that prohibiting anonymous sperm donations in the United

States would lead to a decline in the number of donors and that those

who were still willing to donate would likely demand more

compensation.

183

While on its face, a donor decline in the United States may not

seem like an issue, the real problem arises when one shifts the focus

from the United States to the global sperm market as a whole. The

world’s sperm market is primarily found in the United States and

180. Ollove, supra note 68; see also UH Freezer Malfunction Update,

LEVELAND.COM (Sept. 29, 2019), https://www.cleveland.com/news/2019

/09/uh-freezer-malfunction-update-more-than-150-families-settle-lawsuits-i

n-loss-of-embryos.html#:~:text=University%20Hospitals’%20main%20cam

pus%20in%20Cleveland.&text=CLEVELAND%2C%20Ohio%20%E2%80

%93%20More%20than%20150,Center’s%20fertility%20clinic%20last%20ye

ar [https://perma.cc/9FFX-WVXP] (explaining a situation where a freezer

malfunctioned at a local hospital, losing over 4,000 eggs and embryos. Most

of the 150 families settled their lawsuits outside the courts and the hospital

faced no other consequences.).

181. Keshavan, supra note 15.

182. Glenn Cohen et al., Sperm Donor Anonymity and Compensation: An

Experiment with American Sperm Donors, 3 J.L.

& BIOSCIENCES 468, 468

(2016).

183. Cohen’s proposed solution to the decline in sperm donations is to pay

each donor more per donation where anonymity is removed. His study

found that participants would demand an additional $60 to $127 per

donation, on top of the typical payment. Id. at 470.

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Denmark.

184

The reason for this control over the global market is, in

part, because of laws allowing anonymity for donors.

185

As Ayo Wahlberg, Professor at the University of Copenhagen,

explains, “[t]he repeal of anonymity in many parts of the western world

totally changed the game . . . [a]s soon as [anti-anonymity] legislation

kicks in, numbers plummet.”

186

Most of the world now looks to the United States and Denmark for

its sperm donations.

187

However, with the inability to guarantee

anonymity, many sperm banks and clinics in the United States,

including the country’s largest sperm bank, California Cryobank,

changed their policy to only take non-anonymous donations going

forward.

188

Currently, California Cryobank, has 308 anonymous donors:

116 “open donors,” who agree to be contacted through the bank as an

intermediary, and 134 “ID disclosure” donors, who agree to direct

contact if initiated by the offspring.

189

If Professor Wahlberg’s theory is

correct, and a decline in donation occurs as anonymity is removed, not

only the American market—but also the global market of sperm

donation—will suffer.

C. Estate Planning Is Essential to Dealing with the Bigger Problem

With disagreements over a federally-regulated system and the

possibility of sperm donation declining, it may take years or even

decades for the United States to come to a unified national approach

to regulating ART. In the meantime, donors who were promised

anonymity in the past or those who are still considering donating

genetic material before unified regulations are established, have a

simple and easily accessible solution in front of them: estate planning.

190

184. Soo Youn, America’s Hottest Export? Sperm, THE GUARDIAN (Aug. 15,

2018, 6:00 AM), https://www.theguardian.com/science/2018/aug/15/a

mericas-hottest-export-sperm-fertility [https://perma.cc/2UPN-3X7V].

185. Id.

186. Id.

187. Naina Bajekal, Why So Many Women Travel to Denmark for Fertility

Treatments, T

IME (Jan. 3, 2019, 6:58 AM), https://time.com/5491636/d

enmark-ivf-storkklinik-fertility/#:~:text=And%20for%20those%20eager

%20to,and%20exports%20more%20than%2090%25 [https://perma.cc/Y

FS8-TVAD]; Nellie Bowels, The Sperm Kings Have a Problem: Too Much

Demand, N.Y. T

IMES (Jan. 8, 2021), https://www.nytimes.com/2021/01

/08/business/sperm-donors-facebook-groups.html [https://perma.cc/9SV

5-KSFZ].

188. Youn, supra note 184.

189. Id.

190. Gettier & St. John Meehan, supra note 138, at 188.

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As an expert in third-party assisted reproductive law, Judith A.

Hoechst, Esq. strongly encourages others in her field to include estate

planning when clients use ART.

191

While many parents are reluctant to

spend more money on estate planning after already paying large

amounts for ART treatments, Hoechst explains that “[e]state planning

at the time of contract formation . . . can help avoid litigation after

death or at the time of divorce and ensure that clients’ intentions are

protected.”

192

While Hoechst’s estate planning practice may protect the parents

of a donor-conceived child,

193

little is done to legally protect the donor.

The primary concern for donors is the lack of uniform contracts and

laws, which may leave them exposed to legal parental obligations or

duties, even after the donor-child turns eighteen.

194

Generally, if a

parent-child relationship exists in any capacity, absent a clear

contractual intent, the law presumes a non-marital child as part of the

class of “descendants” or “children” in a decedent’s will.

195

If a donor is

contacted by a donor-conceived child and inadvertently acknowledges

the donor-conceived child as his own, that child is considered an “heir”

and is legally entitled to inherit from both the donor’s estate as well as

the child’s legally-recognized parents.

196

To avoid giving a donor-conceived child the unintentional right to

inherit from their donor, those who have donated genetic material

should update their estate plan.

197

A donor’s will should clearly identify

who is considered a “child,” naming the children then living, children

in utero, and posthumous children, and specifically disinheriting any

children conceived through ART, whether known or unknown.

198

Nevertheless, intestacy and reproductive laws vary in each state. In

California, for example, courts have held that genetic material is a

191. Judith A. Hoechst, Fifty-Something and Pregnant: How ART Has

Extended Fertility—and Generated New Legal Concerns for Parents and

Children, in 50 F

AMILY ADVOCATE 6–7 (Am. Bar. Ass’n. 2016).

192. Id. at 7.

193. Id.

194. Casolo et al., supra note 142, at 330–31.

195. Sarah J. Khoury, Era of ‘ART’ – The Impact of Assisted Reproductive

Technology in Estate Planning, 4 T

HE SPOTLIGHT 3 (2019).

196. Lee-Ford Tritt, Sperms and Estates: An Unadulterated Functionally

Based Approach to Parent-Child Property Succession, 62

SMU L. REV.

367, 381 (2009).

197. H

AAS & ASSOC., P.A., Defining Child: Estate Planning Issues for Families

with Children Born Through Assisted Reproduction Technology (ART),

https://carolinafamilylaw.com/child-estate-planning-children-born-assist

ed-reproduction-technology-art/ [https://perma.cc/GP9Z-ACDZ].

198. Hoechst, supra note 191, at 7.

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unique type of property and donor intent should be heavily factored

when making decisions about genetic material.

199

While state laws differ

on a donor’s parental rights, usually, if a child is conceived through

artificial insemination and the donor is not married to the other

intended parent, they will not have parental rights for or obligations to

the donor-conceived child.

200

In general, many state laws say that if conception occurs through

artificial insemination, then there is an automatic presumption that the

donor gives up his parental rights.

201

However, there are exceptions. In

Pennsylvania, for example, genetic material determines legal parentage,

meaning that if a DNA test shows the sperm donor is the father, then

he will be considered the legal father—even if his name is not on the

birth certificate.

202

In the last five years a Texas court held a known

sperm donor for a lesbian couple as a legal father of the donor-conceived

child, even though the parties signed a contract.

203

Incorporating issues involving ART into a person’s estate plan can

cause some tension but it is prudent in cases with no explicit contracts

surrounding donated genetic material. Where genetic material is

involved, a person’s wishes and intent should be clearly stated.

204

This

may include explicitly disinheriting any known or unknown children

conceived through donated genetic material or ART.

205

If a testator has

previously donated, or plans to donate genetic material, using open-

ended terminology such as “my children” in an estate plan can lead to

will contests when administering an estate.

206

To avoid ambiguity, a

testator should individually name each child they wish to inherit under

their estate. Even in jurisdictions where the donor-conceived child has

little to no legal case, this small change can prevent a large headache

199. Kievernagel v. Kievernagel, 166 Cal. App. 4th 1024 (App. 3d Dist. 2008);

Hecht v. Super. Ct. L.A. Cnty., 16 Cal. App 4th 836, 850–51 (App. 2d

Dist. 1993).

200. Sarah Tipton, Does a Known Sperm Donor Have Any Parental Rights or

Obligations?, L

EGALMATCH (June 28, 2018), https://www.legalmatch.co

m/law-library/article/sperm-donor-parental-rightsobligations.html

[https://perma.cc/6KDJ-PVP9].

201. Id.

202. Id.

203. In re P.S., 505 S.W.3d 106, 109 (Tex. App. 2016).

204. Gettier & St. John Meehan, supra note 138, at 189.

205. Estate Planning for Your Embryos: Do You Have a Plan?,

THOMSON L.

(Dec. 3, 2015), https://cathompsonlaw.com/estate-planning-for-your-em

bryos-do-you-have-a-plan/ [https://perma.cc/L6S8-UVGZ].

206. H

AAS & ASSOC., P.A., supra note 197.

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in the future.

207

Optimistically, in a few years, the United States will

have a uniform solution, and there will be no need to rely on individual

protections from the lack of federal regulations concerning ART.

V. Conclusion

In a world of readily-available home genetics tests, donor

anonymity can no longer exist. As a result, the United States should

learn from the United Kingdom’s HFEA and create a controlling system

that oversees and regulates artificial reproductive technology modeled

after the HFEA. The solutions proposed by the UPA, UPC, and ABA

will never work unless they are enacted by all American states, and the

current trend suggests acceptance in unlikely. Even if the proposed

systems are enacted, the United States would still lack a system of

national authority and enforcement power like the HFEA.

Creating a unified federal system in the United States would also

allow for a national registry to track donors, regulate clinics, and set

the laws for the country. While an Open ID system may decrease the

number of willing donors in the United States, it would prevent donors

who were promised anonymity from being tracked down by a donor-

conceived child through companies like ancestry.com. The unified laws

would also protect gamete donors by establishing laws of legal

parentage and obligations and create uniform agreements for the benefit

of all the parties involved in ART. This solution does impact the

emphasis on individual liberty and the free market that the United

States holds so dearly, but it will allow for informed choices in the realm

of health care where there is a lot on the line.

Author Alicia Ouellette captures this idea when stating, “Even

within a libertarian model, autonomous consumers need reliable

information on the quality of ART providers.”

208

ART is not just a

business enterprise, it encompasses one of the most personal areas of

health care, and the United States should take more consideration to

ensure high standards of care for its citizens.

While these are not perfect solutions, it is important for the United

States to begin to consider regulating these issues as more emerge every

year. ART is growing and evolving at an exponential rate with very

few laws in the United States restraining it. While the United States

still struggles to find the right balance between the anonymity of the

donor and the identity rights of a donor-conceived child, estate planning

is essential for those individuals who have donated genetic material in

the past or will consider donating genetic material in the future.

207. See generally Gettier & St. John Meehan, supra note 138, at 189.

208. Ouellette et al., supra note 42, at 446.