Establishing Identity: How Direct‐to‐Consumer Genetic Testing Challenges the Assumption of Donor Anonymity

• Date: 01 January 2021
• DOI: http://doi.org/10.1111/fcre.12553
• Published date: 01 January 2021

ESTABLISHING IDENTITY: HOW DIRECT-TO-CONSUMER GENETIC

TESTING CHALLENGES THE ASSUMPTION OF DONOR ANONYMITY

Fiona Darroch and Ian Smith

The rise of direct-to-consumer genetic testing is challenging the rules and expectations of the fertility industry concerning

donor anonymity. While ethicists debate whose rights should prevail, many donor conceived people, recipient parents and

donors are currently sharing their genetic information, along with methods to identify genetic links, in vast online communi-

ties, invalidating donor anonymity and providing a platform for those who advocate globally for legislative change to support

donor-linking practices. This article looks at why it is important to access this information in relation to identity and kinship

formation and how the Family Court Community can apply this knowledge in order to achieve better outcomes for children

and families.

Key Points for the Family Court Community:

Anonymity can no longer be guaranteed; direct-to-consumer genetic testing provides both answers and opportunities

to connect with genetic relatives and it is not necessary for a donor to test in order to be identif‌ied.

Donor conceived people argue that they are not bound by anonymity agreements established prior to their

conception.

Research suggests that the majority of donor conceived people are interested in understanding their genetic identity,

although this can vary from seeking basic medical information to wanting contact with relatives for each individual

at various points in time.

While the law stipulates who is considered to be a parent and how parental responsibility is to be allocated, advances

in technology and changes to social norms have resulted in a range of parenting arrangements that include single,

two, three, and even four-parent families.

Terminology has evolved to more accurately describe the roles of each parent and to delineate the familial relation-

ships between those who are both genetically and socially connected.

Some countries allow birth certif‌icates that clearly record both genetic and intended parents. Inaccurate or altered

birth certif‌icates that change surnames or omit details of genetic parents present as obstacles for adoptees and donor

conceived people who wish to establish their genetic identity or build family connections.

As with adoptees, parents of donor conceived children are advised to tell them their conception stories ‘early and

often’, to provide factual information and to use terminology that respects their child’s genetic connections, yet many

parents choose not to disclose the truth to their donor conceived offspring and/or close relatives.

Research suggests that late disclosure (after the age of 3 years) can have a negative impact on adoptees in relation to

identity formation; similarly, those who uncover misattributed parentage secrets, including around donor conception,

are likely to face signif‌icant challenges to their identity.

Understanding the perspective of donor conceived people will assist the courts to take a child-focused position when

dealing with matters involving children conceived through embryo or gamete donation or via surrogacy.

Keywords: Anonymity; Assisted Reproductive Technology; Disclosure; DNA; Donor Conceived Person; Donor Conception;

Donor Linking; Embryo Adoption; Gamete Donation; Identity and Kinship; Misattributed Parentage; Surro-

gacy; Reproductive Justice.

I. ANONYMOUS GIFTS VS GENETIC CHILDREN

Anonymity of sperm and egg donors was for a long time a staple of the Assisted Reproductive

Technology (ART) industry. That wall of anonymity –which worked to separate donor conceived

Corresponding: darrochf‌iona@gmail.com

FAMILY COURT REVIEW, Vol. 59 No. 1, January 2021 103–120, doi: 10.1111/fcre.12553

© 2021 Association of Family and Conciliation Courts

people from knowledge of, and potential connection to, their biological and genetic families –

began to crumble when governments world-wide began to ban anonymous gamete donation.

Legislative action to end anonymous gamete donation,

1

while still on foot in a range of jurisdic-

tions, has been overtaken by the impact of DNA testing. The genie is well out of the bottle –wide-

scale DNA testing has swept aside the question of whether anonymous gamete donation is a sound

practice, or not. Anonymity of sperm and egg donors is a promise that is no longer sustainable.

II. THE RISE OF DIRECT-TO-CONSUMER GENETIC TESTING AND ONLINE

LINKING

DNA prof‌iling has been practiced for over 30 years and was initially used to aid criminal investi-

gation

2

before commercial DNA kits became available to the public. In 2000, Family Tree DNA

(FTDNA) was launched for genealogical research, but it was not until 2007, when clever marketing

saw 23andMe direct-to-consumer kits gain popularity, that other companies such as Ancestry and

MyHeritage followed suit with increased competition prompting a price war,

3

resulting in cheaper

tests offering a greater number of features. In 2009, 23andMe launche d their ground-breaking Rela-

tive Finder feature (now known as DNA Relatives) utilizing autosomal DNA which represents all

ancestral lines, rather than strictly paternal or maternal lines. FTDNA then launched their Family

Finder test in 2010.

4

The number of test kits sold has risen steadily, reaching 26 million by January 2019. One esti-

mate is that there are in excess of 30 million people having tested.

5

If this trend continues, it is

predicted that these data bases will contain data on the genetic makeup of more than 100 million

people within 2 years.

6

Regalado (chart below) puts the number of people tested, as at 2019, at

26 million.

Source: MIT Technology Review, February 11, 2019. (Chart reproduced with author’s

permission.)

III. WHY TEST?

It is fair to say that the majority of consumers test purely for recreational purposes. In both America and

the United Kingdom, genealogy is the second most popular hobby, preceded by gardening.

7

As baby

boomers move into retirement age, it seems that many are seeking a connection to their ancestors.

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