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.
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.