Direct‐to‐Consumer Genetic Testing, Gamete Donation, and the Law

• Author: Abigail Hoglund‐Shen
• Published date: 01 July 2017
• Date: 01 July 2017
• DOI: http://doi.org/10.1111/fcre.12288

DIRECT-TO-CONSUMER GENETIC TESTING, GAMETE DONATION,

AND THE LAW

Abigail Hoglund-Shen

Once thousands of dollars, direct-to-consumer (DTC) genetic testing has become affordable and readily accessible in recent

years. The technology can reveal a wealth of information to consumers: health risks, ancestry composition, and connections to

genetic matches through relative databases. However, the law has not yet regulated many aspects of this new technology. This

article analyzes how the law should regulate DTC genetic testing within the context of gamete donation. It will argue that gam-

ete donors’ privacy interests warrant state regulation of DTC genetic testing kits and their associated genetic relative databases.

It will also explore how state regulation should balance the competing interests of gamete donors and of donor-conceived indi-

viduals.

Key Points for the Family Court Community:

Direct-to-consumer (DTC) genetic testing reports can reveal one’s genetic relatives, which may allow donor-conceived

children to discover their biological parents. This threatens gamete donors’ anonymity.

DTC genetic testing is still a new technology in the consumer marketplace, so the government has not yet regulated

genetic relative databases.

Gamete donors’ privacy interests in remaining anonymous likely outweigh artificially conceived individuals’ right to

know their gamete donors.

To protect gamete donors’ privacy interests, state governments should limit donor-conceived consumers’ access to

genetic relative databases while ensuring their ability to access health data.

Keywords: Artificially Conceived Children; Direct-to-Consumer Genetic Testing; Gamete Donation; Genetic Relative

Databases; Health Reports; Sperm Donation; and State Regulation.

I. INTRODUCTION

A few weeks ago, I discovered I was a distant relative of the Cheddar Man, one of Britain’s oldest

known inhabitants. I had used a genetic test to analyze my saliva for my genetic blueprints; for about

$200 and some spit, I was able to trace the footprints of 40,000 years of ancestry with direct-to-

consumer (DTC) genetic testing. These tests allow users to access and analyze ancestral DNA,

understand health information, and connect with a database of genetic relatives. After taking the test,

I also found a long-lost cousin and discovered other genetic trivia: I was an (asymptomatic) carrier

for the phenylketonuria gene; I had a decent chunk of previously unknown Italian, Balkan, and North

African ancestry; and I was genetically predisposed to be lactose intolerant.

Though my discoveries from DTC genetic testing were relatively innocuous, others’ genetic reve-

lations have sparked controversy or triggered anguish. One individual discovered her true biological

father worked at the fertility clinic at which her parents had pursued treatments and had swapped out

her supposed father’s sperm sample for his own.

1

Additionally, others have discovered that they are

predisposed for certain kinds of cancer

2

or that they have higher-than-average risks for heart disease.

3

Still others could potentially discover the secret genetic diseases of their unknown sperm-donor

fathers. After a genetic test, one man discovered he had inherited a certain heart disease–triggering

gene from his family; while the individual in this case did not have a sperm donor father, it is easy to

imagine a situation where such a troubling discovery about one’s sperm donor father could occur.

4

What happens when DTC genetic testing reveals controversial or alarming information? For

Correspondence: ahoglund12@gmail.com

FAMILY COURT REVIEW, Vol. 55 No. 3, July 2017 472–484

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C2017 Association of Family and Conciliation Courts