Do Your Family Members Have a Right to Your Genetic Code?
By Emily Mullin,
MIT Technology Review
| 11. 22. 2016
When a woman gets her genome sequenced, questions about privacy arise for her identical twin sister.
In August 2015, Samantha Schilit went to her primary care doctor to get a blood draw. A PhD candidate at Harvard specializing in human genetics, she was itching to unlock the secrets of her genes with a test called whole-genome sequencing, which provides a full readout of a person’s DNA.
Patients must give their informed consent before undergoing whole-genome sequencing or any other genetic test. But there are no laws that restrict what patients can do with their own genetic information, or that require patients’ family members to be involved in the consent process. This raises questions about who owns an individual’s genetic code, since family members share many genetic traits and may harbor the same genetic abnormalities associated with certain diseases.
When Schilit got her test results back a few months later, she didn’t consider that her identical twin sister Arielle Schilit Nitenson, a PhD student in neuroscience at Brown University, would have concerns about the test. The two co-authored an article in...
Related Articles
By Emily Glazer, Katherine Long, Amy Dockser Marcus, The Wall Street Journal | 11.08.2025
For months, a small company in San Francisco has been pursuing a secretive project: the birth of a genetically engineered baby.
Backed by OpenAI chief executive Sam Altman and his husband, along with Coinbase co-founder and CEO Brian Armstrong, the startup—called...
By Jessica Hamzelou, MIT Technology Review | 11.07.2025
This week, we heard that Tom Brady had his dog cloned. The former quarterback revealed that his Junie is actually a clone of Lua, a pit bull mix that died in 2023.
Brady’s announcement follows those of celebrities like Paris...
By Emily Mullin, Wired | 10.30.2025
In 2018, Chinese scientist He Jiankui shocked the world when he revealed that he had created the first gene-edited babies. Using Crispr, he tweaked the genes of three human embryos in an attempt to make them immune to HIV and...
Public domain portrait of James D. Watson by Cold Spring Harbor Laboratory
and the National Human Genome Research Institute on Wikimedia Commons
James Watson, a scientist famous for ground-breaking work on DNA and notorious for expressing his antediluvian opinions, died on November 6, at the age of 97. Watson’s scientific eminence was primarily based on the 1953 discovery of the helical structure of DNA, for which he, Francis Crick and Maurice Wilkins shared the 1962 Nobel Prize in Physiology or...
