Are your family members entitled to access your genetic code?

After deciphering the woman’s genome, her twin sister has questions about privacy

Twins Samantha Schilit (left) and Ariel Schilit Nitenson (right) at the Nitenson wedding in 2013.

In August 2015, Samantha Schilit visited her therapist for blood tests. She was a Ph.D. at Harvard, specializing in human genetics, and she was very interested in revealing the secrets of her genome using a complete decryption that provides a complete listing of human DNA.

Patients must agree to a complete DNA transcript or any other test. But no laws prohibit them from doing anything with their genetic information, nor do they require the intervention of relatives of patients. And this raises questions of ownership of the genetic code - after all, family members share many of the properties of this code, and can be carriers of similar genetic anomalies associated with various diseases.

When Schilit received the test results, she did not think that these results would excite her twin sister Ariel Schilit Nitenson, who studied neurobiology at Brown University. Together, they described their experiences in an article for the Journal of Genetic Counseling .

“Your genes do not belong to you,” says Nitenson. Shilith and Nitenson, identical twins, have a nearly identical genetic code. So all the important information that Shilith could get from the test applies to Nitenson.

But Nitenson, unlike her sister, was not eager to find out what possible mutations lurk in her DNA, so she was worried about the availability of access to her genocode in other people. She did not want this information to be used for research purposes or the insurance company to use the information to discriminate against her. In 2008, the U.S. Congress passed a non-discrimination law on genetic information that prohibits genetically discriminating against people when hiring and calculating health insurance, but does not prohibit the use of information to calculate life insurance, disability, or long-term health insurance.

David Flannery, medical director of the American College of Medical Genetics and Genome, an organization made up of professional geneticists, says concern about privacy and access to genetic information is not new. But these problems got more complicated after full decoding of genes became commercially available in 2013 [ quick example : 38 laboratories in the USA offer a complete decoding of the genome at prices starting at $ 350 - approx. perev. ]. Tests produce huge amounts of data, only a small fraction of which may be associated with health risks.

It turned out that the results of the Schilit test showed the presence of a rather healthy genome. They carried very few diseases of moderate severity, but one of them became dangerous when Nitenson became pregnant with her first child this year. One of the mutations could cause problems during childbirth. Some common methods of pain relief and childbirth techniques may be at risk for her and her baby. Armed with this knowledge, Nitenson, who is at the 28th week of pregnancy, together with the obstetrician began to draw up a special plan for childbirth.

Nitenson did not want to disclose the details of this anomaly because of concerns about the privacy of her unborn daughter, although her sister was ready to share her data with the public. But Schilith and Nitenson agreed on what they agreed to share and what should remain private.

Laura Hercher, a professor at Sarah Lawrence College of Ethics who teaches ethical issues in genetic counseling, says their agreement is an ideal scenario when a family member decrypts the genome.

Agreements for the complete decoding of the genome and exoma are, in her words, very different. Some companies conducting their tests have their own forms of agreements, some clinics and healthcare systems have their own procedures for discussing with patients the benefits and consequences of genetic testing. Most tests require the signature of a general practitioner, regardless of genetics competency.

Shilith says she told the doctor who approved the test about her twin, but they never had discussions about the effects of the test on her sister. Hercher says that doctors are responsible for asking the patient to notify their family members when serious diseases have been identified in genetic tests. But in the end, “family members do not have a veto” to decide on genetic testing.