Last week, an agreement went into effect between the National Institutes of Health (NIH) and the family of Henrietta Lacks, a woman who died of cervical cancer in 1951 and whose cell line — taken without consent and used without permission — influenced cancer studies for 60 years. With it, a measure of privacy has been returned to her genetic descendants, but writer Taylor Beck questions whether enough is being done to ensure that others’ genomes are similarly protected at a time when it’s becoming easier than ever to hack them.
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What’s the Big Idea?
Beck writes, “In most states, it’s legal for doctors to take blood or tissue samples for research, without consent, as long as they were taken for a medical reason and stripped of ‘identifying information’ like a name or social security number.” However, technology will soon exist that could eventually allow a hacker to decode that identifying information and use it to impact a person’s employment or insurability. In 2011, the US government released a proposed policy that addressed many of the privacy and consent questions involved in the Lacks case. Two years later, the proposal has not made much progress.