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Emma Espiner: Why give away our DNA?

In the share-everything digital age, Emma Espiner asks: who is looking out for the security of our biological data and why are people paying to give away their genetic privacy?

Then:

The history of scientific discovery is inspiring and horrifying in equal measure. For every leap forward there’s a parallel narrative of abuse of power and of overriding the rights of vulnerable people in the name of progress.

Meredith Wadman’s The Vaccine Race details how the earliest vaccines were tested on patients with terminal cancer diagnoses, without their consent. Institutionalised ‘mentally defective’ people in the United States were a common source of ‘volunteers’ for drug trials, and aborted foetuses were procured, often without the mother’s consent, to develop cells to provision laboratories around the world with the means to test pharmaceuticals and develop vaccines.

The notion of informed consent was a latecomer to the stage. Author of The Immortal Life of Henrietta Lacks, Rebecca Skloot, writes “Many scientists believed that since patients were treated for free in the public wards, it was fair to use them as research subjects as a form of payment.”

A similar view prevailed here, in one notable example. Women with a precursor of cervical cancer, carcinoma in situ (CIN), went untreated at the National Women’s Hospital during a study initiated in 1966 under the authority of Professor Herb Green. Dr Ron Jones writes about the fallout for himself and others who challenged Green in his book Doctors In Denial, and reveals the privilege of inside knowledge; clinicians who hadn’t the courage to challenge Green as Jones had, still quietly diverted their wives and family members with CIN to other treatment facilities. We discover, unsurprised, that those with the least knowledge and connections to power suffered the most.

It was the exposure of this ‘experiment’ by Phillida Bunkle and Sandra Coney in Metro magazine which led to the Cartwright Inquiry. This in turn initiated a binding code of ethics requiring the informed consent of research subjects. Earlier this month an apology was finally delivered by the Auckland DHB to survivors of the study.

Protection and control over one’s data is a new frontier of the battle for privacy and sovereignty in our increasingly open-data environment.

For indigenous and oppressed peoples the story is darker still. At the Tuskegee Institute in the United States in the 1930s, researchers decided to observe the ‘natural history’ of syphilis. They recruited hundreds of African-American men with the disease and then watched them die. Penicillin was found to be successful at curing syphilis but these research subjects weren’t offered any. They died slow and painful deaths while the US government watched.

It wasn’t just abuse of bodies. It was also the abuse of people’s sovereignty over their own flesh. Henrietta Lacks was a poor African American woman in the United States whose cells were taken without her knowledge or permission when she was treated for cancer. Her cells were grown, replicated and sent to research labs all over the world. Her family weren’t told, nor were they the beneficiaries of any of the significant financial largesse following from the remarkable medical discoveries arising from experiments using the ‘HeLa’ cells.  

Now:

It seems fitting, at a time in history where people give away their personal information for the privilege of using platforms like Facebook or Twitter or Instagram for ‘free’, that we should see the offering up of biological information in a similar fashion. The inane ‘share everything’ culture has gone to another level.

‘Verifying’ one’s ancestry is the peculiar current trend exploited by companies like MyHeritage, AncestryDNA or 23andMe. These companies tell you that you’re a tenth Viking and a sixteenth Scottish and whichever else is found in the soup of your DNA sample. These are estimations based on each company’s proprietary database of representative genomes. For example, a company will have sequenced the genomes of a group of people currently living in a particular geographic region, with unbroken ancestry up to a certain point, and then compare the patterns of these genomes with yours. If you have a high degree of correlation, bingo. Long lost cousins. However, if you then use another service you might find out you’re only 2 percent Viking and mostly African. This is because each company has a different reference set of genomes. You can see how this starts to look like an imperfect approach and the companies themselves provide disclaimers to this effect.

But it doesn’t stop there. When customers send their DNA to 23andMe they sign a waiver which allows the company to use that DNA for other research purposes. 23andMe then signed a multimillion dollar deal which would hand over some of this genetic information to pharmaceutical multinational GlaxoSmithCline for research purposes. The ancestry-seekers, will apparently receive nothing extra for their ‘participation’. A journalist for Australia’s SBS tells us that “A little-understood aspect of the DNA testing industry is that many companies are not making their money from selling test kits, but by selling customer data.”

When you partner imperfect science with the ability to act under legal authority to convict someone, it’s a scary picture for everyone, and worse for minorities who have been treated less than fairly by the justice system in the past.

Some people might be comfortable with this. Perhaps the same people who are willing to share every second of their lives on Facebook, but it’s a big leap to take for others and especially worrying for minorities such as indigenous peoples. A recent study found that ‘mistrust of medical science’ is a major predictor of indigenous engagement with bio-banking and other large-scale research initiatives. There is a history to this. Two local examples of the dangerous abuse of trust in genomic research among indigenous communities include the ‘warrior gene’ claimed to underpin ‘Māori aggression’ and the genetic markers which claimed to link alcoholism to Aboriginal ethnicity. It is unlikely that people will differentiate between a commercial entity misusing their information and the medical research community in general. We’re all tarred with the same brush.

There are also criminal justice implications. This year the United States pressed charges in two high-profile historic cases with the aid of information stored by companies that used genomic data uploaded by a wide variety of users who probably never imagined that their search for ancestry could have been put to such purpose. When you partner imperfect science with the ability to act under legal authority to convict someone, it’s a scary picture for everyone, and worse for minorities who have been treated less than fairly by the justice system in the past.

Protection and control over one’s data is a new frontier of the battle for privacy and sovereignty in our increasingly open-data environment. For those of us interested in researching health issues, our ability to do so relies on the trust of the communities we are researching with. A very fast way to lose this trust would be to engage in practices which expose the security of people’s biological and genetic information to misuse. This relates to use of commercial genetics companies but it should also be a word of caution for those looking to collect, store or share research subjects’ information for less venal purposes.

I suggest we could look to leaders like Te Mana Raraunga, the Māori data sovereignty network, to guide our thinking in this area. Concerned with protecting the integrity of Māori relations with our data and the world around us, Te Mana Raraunga offers an example of how non-Māori might begin to consider their data too. If it is something to be valued and protected, would all communities not benefit from research which was done with them rather than to them, and with involvement over what happens to the research and their genetic material, tissue or bodies involved. This is the thing about science. As pure and objective a pursuit as it’s held to be, it doesn’t automatically benefit everyone equally. We must make it do so.

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