Why we need safeguards against genetic discrimination

“Genetic discrimination involves an individual or a group being negatively treated, unfairly profiled or harmed, relative to the rest of the population, on the basis of actual or presumed genetic characteristics.“

It will be up to policymakers to decide how to design laws around genetic discrimination. And it won’t be simple. The laws may need to look different in different countries, depending on what technologies are available and how they are being used. Perhaps some governments will want to ensure that residents have access to technologies, while other may choose to limit access. In some cases, a health-care provider may need to make decisions about a person’s care based on their genetic results.

In the meantime, Joly has advice for anyone worried about genetic discrimination. First, don’t let such concerns keep you from having a genetic test that you might need for your own health. As things stand, the risk of being discriminated against on the basis of these tests is still quite small.

And when it comes to consumer genetic testing, it’s worth looking closely at the company’s terms and conditions to find out how your data might be shared or used. It is also useful to look up the safeguarding laws in your own country or state, which can give you a good idea of when you’re within your rights to refuse to share your data.

Shortly after I received the results from my genetic tests, I asked the companies involved to delete my data. It’s not a foolproof approach—last year, hackers stole personal data on 6.9 million 23andMe customers—but at least it’s something. Just this week I was offered yet another genetic test. I’m still thinking on it.

Now read the rest of The Checkup

Read more from MIT Technology Review’s archive:

As of 2019, more than 26 million people had undertaken a consumer genetic test, as my colleague Antonio Regalado found. The number is likely to have grown significantly since then.
 
Some companies say they can build a picture of what a person looks like on the basis of DNA alone. The science is questionable, as Tate Ryan-Mosley found when she covered one such company.
 
The results of a genetic test can have profound consequences, as Golda Arthur found when a test revealed she had a genetic mutation that put her at risk of ovarian cancer. Arthur, whose mother developed the disease, decided to undergo the prophylactic removal of her ovaries and fallopian tubes. 
 
Tests that measure biological age were selected by readers as our 11th breakthrough technology of 2022. You can read more about them here.
 
The company that gave me an estimate of my biological age later reanalyzed my data (before I had deleted it). That analysis suggested that my brain and liver were older than they should be. Great.

From around the web:

Over the past few decades, doctors have implanted electrodes deep into the brains of a growing number of people, usually to treat disorders like epilepsy and Parkinson’s disease. We still don’t really know how they work, or how long they last. (Neuromodulation)

A ban on female genital mutilation will be upheld in the Gambia following a vote by the country’s National Assembly. The decision “reaffirm[s the country’s] commitments to human rights, gender equality, and protecting the health and well-being of girls and women,” directors of UNICEF, UNFPA, WHO, UN Women, and the UN High Commissioner for Human Rights said in a joint statement. (WHO)

Weight-loss drugs that work by targeting the GLP-1 receptor, like Wegovy and Saxena, are in high demand—and there’s not enough to go around. Other countries could follow Switzerland’s lead to make the drugs more affordable and accessible, but only for the people who really need them. (JAMA Internal Medicine)

J.D. Vance, Donald Trump’s running mate, has ties to the pharmaceutical industry and has an evolving health-care agenda. (STAT)

Psilocybin, the psychedelic compound in magic mushrooms, can disrupt the way regions of our brains communicate with each other. And the effect can last for weeks. (The Guardian)