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Second Look at Informed Consent

The concept of "informed consent" is being debated as geneticists, researchers, clinicians and ethicists try to figure out how to keep the case of the Havasupai Indians versus Arizona State University from happening again. The tribe sued the university, and won a settlement, after they said the researchers who had taken blood samples to test for diabetes also used the samples for other genetic testing without telling the tribe first. The New York Times' Amy Harmon says some researchers are proposing an international tribunal similar to the Helsinki human rights agreement, to specify how researchers can ethically deal with their test subjects. Other scientists, Harmon says, suggest researchers keep in touch with research participants so they can be consulted on new projects that would entail utilizing their genetic material. "Do participants need to be told that their privacy cannot be guaranteed? Can 'blanket' consent up front do the trick, or is even that misleading because researchers can't adequately describe the scope of studies they have yet to design? Is it O.K. to use DNA collected for heart research to look for genetic associations with intelligence, mental illness, racial differences?" Harmon asks. The article quotes NIH geneticist Stephen O'Brien, who says communication with the public is key in avoiding these kinds of problems. Harmon adds that some researchers are trying new consent models to see what works, such as reporting their findings directly to research participants and hiring genetic counselors to talk participants through the various possibilities and likely outcomes of the testing.

The Scan

Fertility Fraud Found

Consumer genetic testing has uncovered cases of fertility fraud that are leading to lawsuits, according to USA Today.

Ties Between Vigorous Exercise, ALS in Genetically At-Risk People

Regular strenuous exercise could contribute to motor neuron disease development among those already at genetic risk, Sky News reports.

Test Warning

The Guardian writes that the US regulators have warned against using a rapid COVID-19 test that is a key part of mass testing in the UK.

Science Papers Examine Feedback Mechanism Affecting Xist, Continuous Health Monitoring for Precision Medicine

In Science this week: analysis of cis confinement of the X-inactive specific transcript, and more.