Ethical Use of Home DNA Testing

Ethical Use of Home DNA Testing

Home DNA testing is a booming business. Millions of Americans have sent their DNA to
commercial testing companies such as 23andMe or Ancestry to learn more about their heritage or
potential for disease. According to Grand View Research, “the global DNA testing market is set
to reach over $10 billion by 2022.” (Brown 2018). Successful marketing campaigns have led
consumers to believe that home DNA testing is fun, informative, and personal to them. However,
what consumers may not realize is that once their genetic information is shared, they have
limited control as to who has access to it.

Regardless of the reason consumers decide to purchase a home DNA test kit, the information
they provide to the testing company is far greater than the information they receive. The benefits
that these testing companies can gain from gathering, using, and selling customers’ private
information places them in a significant conflict-of-interest situation. Some of this information
includes the IP address, name, address, email, and family history, collected from the application,
as well as information provided on follow up surveys. Furthermore, according to its website, if
customers opt to share their data for research, 23andMe could keep their physical spit sample and
the genetic data it contains for up to a decade. Additional information that consumers upload to
the companies’ genealogy website, such as pictures, obituaries, family relationships, and even
third-party information is probably added to the pool of data linked to customers’ DNA.

Recently, some have felt that privacy and consumer rights have been violated when they used
home DNA kits. In June 2019, Lori Collett sued Ancestry for allegedly misleading customers
about what it was doing with their DNA. This class action lawsuit claims that personal
information was released to outside parties without customer consent. Further contentions
include that the waiver of consumer rights through consent forms is often vague, general in
scope, and ever-changing. The fine print may not accurately spell out what the company, its
third-party associates, and collaborators can or will do with customer information. (Merken,
2019)
Further concerns arise as testing companies often align themselves with pharmaceutical
companies, public and private research organizations, and Google. For example,
“GlaxoSmithKline purchased a $300 million stake in the company, allowing the pharmaceutical
giant to use 23andMe’s trove of genetic data to develop new drugs — and raising new privacy
concerns for consumers.” (Ducharme, 2018) Similarly, Ancestry is sharing its data with Google
through its research subsidiary Calico. Ancestry admits that “once they share people’s genetic
information with partner companies, they can’t be responsible for security protocols of those
partners.” (Leavenworth, 2018).
Additionally, both 23andMe and Ancestry use Google Analytics to provide third parties with
consumer information for targeted marketing. In its privacy policy 23andMe states that “when
you use our Services, including our website or mobile app(s), our third-party service providers
may collect Web-Behavior Information about your visit, such as the links you clicked on, the
duration of your visit, and the URLs you visited.” This use of shared information allows testing
services and third parties to build a comprehensive personal profile on you, which may include
your genetic information.
Although privacy may be a concern of consumers, law enforcement with the cooperation of
DNA testing companies, either through partnership or warrants, have brought justice to the
victims of numerous unsolved cases. Over the past few years, the use of consumer DNA
databases have closed many high profile cold cases such as the Golden State Killer and
overturned the wrongful conviction of Alfred Swinton. In some cases, such as the Golden State
Killer, the DNA used to identify suspects are cross-referenced through the DNA of relatives as
far removed as third cousins. However, this has brought additional concerns, as a DNA expert
for the American Civil Liberties Union, Vera Eidelman states, “There’s always a danger that
things will be used beyond their initial targets, beyond their initial purpose.” (St. John 2019)
The success of consumer DNA databases has led some law enforcement to meet with Bennett
Greenspan, the CEO of FamilyTreeDNA, seeking his help to convince consumers to share their
genetic data with police. This partnership has resulted in the creation of the non-profit Institute
for DNA Justice that has the following stated mission:
“The Institute for DNA Justice was formed to educate the public about the value of investigative
genetic genealogy (IGG) as a revolutionary new tool to identify, arrest, and convict violent
criminals, deter violent crime, exonerate the innocent, encourage the 26 million Americans who
have taken a DNA test to become genetic witnesses by participating in publicly available family-
matching databases working with law enforcement using IGG, and to promote the adoption of
industry leading best practices guidelines surrounding its use by law enforcement agencies
around the country.”
Regardless of public or private testing, laws in the United States have not yet determined a
standard for the home DNA testing industry.
Discussion Questions
1. What happens to your DNA profile and genetic material if your testing company goes out of
business? What should happen to it?
2. Who should have access to your genetic information? In the case of law enforcement using
consumer DNA databases, does the common good out way the individual’s rights? Is there a
middle ground?
3. What right do individuals have over their DNA? If you have an identical twin, with the exact
same DNA, should dual consent be required?
4. What recourse do you have if the company’s database is hacked and your information ends up
on the internet or in criminals’ hands?
5. Does the good that flows from DNA evidence being used to bring some criminals to justice
and to exonerate wrongly-convicted people justify the invasions of privacy and other wrongs
described in this case study?

Ethical Use of Home DNA Testing

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