The issues behind at-home genetic tests
By: Clémentine Mariani
Tags: Law, Discrimination, Inequality, Genetics, Technology

About 26 million individuals in the world have already taken an at-home genetic test. These tests are very simple and appealing: for less than $100, anyone can receive a small colorful kit at home, spit, send it back, and get a nice detailed report of their genealogy and disease risks. Hard to refuse, isn’t it? However, what happens after the results are sent to individuals? The genetic data of each person taking the test are stored in genetic databases owned by a few multinational companies. According to the MIT Technology Review, if the growth rate of this industry continues, these companies could own the genetic data of 100 million people in 2 years.

A major concern for individual rights

The first concerns are about individual rights. DNA carries very private and sensitive information, not only because it is inherent to the individual, but also because it reveals insights about people, about their present and potential future health status. This brings significant scientific potential and richness, as well as a real risk.

In 2018, the pharmaceutical giant GlaxoSmithKline paid $300 million to 23andMe to use the genetic data collected by the latter for research purposes. This collaboration was justified by the necessity of collecting genetic data to allow scientific progress, but the question of the privacy of the 5 million users of 23andMe is highly questioned. A major challenge of this new technology is thus played out at the level of an individual’s private life. The right to privacy is a fundamental right, protected at the State and international level, and DNA is considered as one of the most private information of all. There is therefore a clear and significant risk if an individual’s genetic information is disclosed to the public.

« If people are concerned about their social security numbers being stolen, they should be concerned about their genetic information being misused. (…) When information moves from one place to another, there’s always a chance for it to be intercepted by unintended third parties », Peter Pitts, president of the NGO Center for Medicine in the Public Interest.

Who are these third parties that Petter Pitts mentions? The individual is not the only one that has interests over his own genetic information. Other actors as employers, insurance companies, banks, immigration agencies, have an interest in possessing a client’s genetic information.

Genetic testing and “third parties”

DNA is a treasure, which has a real commercial value, and is therefore sought after by many “Third Parties”.

Photo by National Cancer Institute on Unsplash

The economic benefits of genetic testing

There are several economic, health, and safety reasons that may justify the use of genetic testing by third parties.

In the field of employment, employers want to maximize the productivity of their employees and minimize the risk of illness, or even absenteeism. In times of recession, employers could simply determine who to keep in the company by looking at who is most likely to be a liability in the future.

Administering such tests could also have major benefits in terms of occupational safety and health. For instance, in jobs where the employee is in a position to harm others (e.g., an airline pilot), genetic testing to verify an employee’s risk of mental illness would be very useful before hiring him or her.

Similarly, insurance companies have a major interest in administering genetic tests to potential clients. Accessing one’s genetic information would be a very efficient way to know without error or fraud the risk of a potential customer.

Open access to the genetic information of millions of individuals would also be a great asset for the field of research, which faces restrictions on access to data.

Photo by Sushil Nash on Unsplash

The use of genetic information by third parties creates an environment of denial of equal opportunities, based on factors that can neither be controlled nor changed: genes.

These applications present a high risk of data misuse. In addition to the violation of fundamental individual rights, such as the right to privacy, this type of use of personal data can cause a widespread phenomenon of genetic discrimination. Employers, insurance companies, banks, or immigration agencies when granting loans or visas could take into account factors that the individual does not know about himself, and could be in violation of the right to non-discrimination.

A person with high-risk genes (such as breast cancer BRCA genes for example), although these genes may be dormant, may be denied employment, a loan, health insurance, or charged an overpricing on the basis of their genetic information.

Today, insurance companies or banks already take into account the risks presented by a customer when determining a price. However, all the factors taken into account are known by the individual (age, sex…) or determined by himself (lifestyle, if he smokes…). Taking genetic information into account would be a further violation of individual rights, basing discrimination on factors of which the individual is unaware. The serious risk of this new type of discrimination is to create a new social class based on genetic information.

Photo by Miko Guziuk on Unsplash

Historical misuse of genetic Information

Although these situations may seem completely hypothetical and exaggerated, they have already happened in history. The use of genetic data is closely linked to the doctrine of eugenics, based on the belief that science must be pushed further to improve humans and promote genetic superiority. The most obvious example of the extensive use of the doctrine of eugenics is Nazi Germany, where genetic information (limited to the means of the time of course) was used for a genocidal purpose to eliminate the « genetically inferior » (the disabled, the ill…). This example may seem far-reaching, some might say. However, the eugenicist movement also has very important roots in the United States. In the 1920s, during large waves of immigration, gene selection was very popular. Large State fairs were set up, highlighting « Grade A individuals » who could win prizes. At that time, many sterilization laws were also introduced in the United States against those considered « genetically defective ». 32 American states introduced forced sterilization laws based on genetic selection between 1907 and 1937.

It was a decision of the United States Supreme Court that federally instituted genetic selection. Through the case of Buck v. Bell (1927), the Supreme Court authorized State-sponsored sterilization, justified by the eugenicist doctrine. It was recommended for « unfit people », including those who were considered « intellectually inferior ». It was during this case that Justice Holmes pronounced his famous statement « Three generations of imbeciles are enough » to justify sterilization laws based on genetic information. Nazi lawyers during the Nuremberg trials also referred to Buck v. Bell as a precedent for legal sterilization and as an example of « race protection laws in other countries ». The case was never explicitly returned or invalidated. What would happen today if this decision, by the highest court in the country, was combined with rapid technological advances and the massive collection of genetic data from millions of users?

These dangers to the fundamental freedoms of individuals, the risk of a new kind of generalized discrimination, as well as the abuses that have already taken place, show the need to regulate genetic testing technologies.