This story originally appeared on Massive Science , an editorial partner site that publishes science stories by scientists. Subscribe to their newsletter to get even more science sent straight to you. This slightly changes our question: If a scientist had your cells, would you care? Would you hand over this discarded part of yourself for the greater good?
And are these cells even yours in the first place? Back in the mids, a patient with cervical cancer had her tumor biopsied to make a diagnosis. To try and understand cancer, these abstracted cells were kept and cultured. Unlike those studied before, these cells never died — previous cell samples would wither and stop replicating after a few weeks or months, making long-term studies on tissues difficult.
But these cells had a particular cancerous mutation that allowed them to flourish. However, neither Henrietta nor any of her family members consented to the prolonged use of her cells. As such, the past 60 years or so of research, including the development of the polio vaccine, relied on the cervical cells taken from an uninformed and underprivileged patient.
Not only that, companies were mass producing her cells and distributing them across the globe for a huge profit without the Lackses seeing a single penny. Organisations using biological specimens have an obligation to balance respect for participants with research benefits. The recent film, The Immortal Life of Henrietta Lacks , tells the true story of an African-American woman whose cancer cells - code named HeLa - were taken without her knowledge in They were used to create a stem cell line, which had enormous clinical significance and commercial benefit in the decades since, but not for her or her family.
Lessons have been learned since then, and use of DNA without knowledge or consent would now be considered a shocking breach of legal and ethical principles. Although research is needed to further knowledge, this cannot be at the cost of individual interests.
Studies have shown that although individuals are happy to donate DNA samples, they may have concerns about how their samples are going to be used. Informed consent is at the cornerstone of a robust research governance system.
However, in genomic research, samples may be stored for unspecified and perhaps even unknown future use. How then can consent be truly informed? It is not obliged to talk you through its terms and conditions, and it could change these at any time — though in some jurisdictions this may void your consent.
You can also withdraw your consent at any time, but that withdrawal generally takes time to come into effect, and in the meantime your data may have been passed on — after which it is harder to get it back.
Erasing it entirely is harder still. And what rights do the customers have over the product developed from their data? DTC companies are far from the only ones collecting sensitive data about you. National health systems, health insurers and, increasingly, social media providers are too. There are echoes of Henrietta Lacks here, the African-American woman whose cells became a workhorse of biomedical research after she underwent a biopsy in , and who was never compensated nor did she give her consent, but that was allowed under US law at the time.
The larger issue, though, is that with all of these databases there is ambiguity about who has access to them, and for what purposes. Should you be afraid? Some individuals worry they will discover things about their DNA that will be frightening — namely, the risks they run of contracting various diseases — and not know how to move forward with the information.
Professional scientific skeptics contend the information may not even be as accurate as claimed, and lead people to make questionable health decisions. But there's another type of risk that consumers aren't focusing on as much, and it's a big one: privacy. There is nothing more private than your personal genetic information, and sending away for a personal genome kit means sharing your DNA with the testing companies. What do they do with it, beyond providing consumers with genetic and health assessments?
Companies in this space, including 23andMe , Veritas Genetics and Ancestry, have a good reason to protect your DNA — their business future depends on maintaining the trust of consumers. But there are thorny issues related to genetic privacy that still today don't have easy answers or iron-clad legislative protections.
And regulators aren't convinced they are doing right by consumers. A recent Fast Company report indicates that 23andMe and Ancestry are being investigated by the Federal Trade Commission over their policies for handling personal info and genetic data and how they share that info with third parties. It identifies you, so if you are going to entrust it to a company, you should try to understand what the consequences are," said Jennifer King, director of consumer privacy at Stanford Law School's Center for Internet and Society, whose research on the issue and interviews with individuals shows a lack of consumer knowledge.
Here are five of the biggest privacy risks for consumers sharing their DNA with testing companies. Obviously, this is not a risk that the genetic-testing industry alone faces, but it is an industry that has a unique set of information on its consumers. And there was a recent hack in the space. More than 92 million accounts from the genealogy and DNA testing service MyHeritage were found on a private server, the company announced earlier this month.
DNA data, specifically, was not breached, the company said. But a hack in this space is a concern, regardless. One of the most compelling signs that consumers have a positive view of these companies is that a majority agree to let them share DNA with researcher partners.
All of these companies make clear that they will not share your DNA with any third-party unless you explicitly consent to it, but as 23andMe data shows, the vast majority of consumers opt in — at 23andMe, more than 80 percent.
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