00:53 - Source: CNN
What is Parkinson's disease?

Editor’s Note: Madeleine Deliee has written about education, parenting, and geek culture for the Washington Post, Playboy, Pacific Standard, Woman’s Day and Ozy. Follow her on Twitter at @MMDeliee. The opinions expressed in this commentary are those of the author; view more opinion articles on CNN.

CNN —  

I consider myself a private person. I don’t even like to do karaoke. I was the kid who never shared her grades at report card time.

Madeleine Deliee

So the recent announcement that DNA testing company 23andMe is partnering with GlaxoSmithKline, using test results to assist in drug development, makes me uneasy. You don’t get more personal than your DNA, and allowing corporate access to that information bothers me.

I haven’t had my test done, but my brother used the 23andMe service to trace family ancestry and get his own health profile. The ancestry results were exactly what we expected, he didn’t find anything significant in the health information, and I didn’t see the need to repeat the process. Lately, though, I’ve considered whether I should do the health portion myself. I know there’s a decent possibility of at least one unwelcome twist in there, and I’m not sure I want to confirm it. My dad was diagnosed with Parkinson’s – the disease that the companies are making the focus of their first project as collaborators – about a decade ago, and the National Institute of Health says that about 15% of those with the disease have a family history. Parkinson’s is especially present for many this week, given the news that Alan Alda has revealed he’s been living with Parkinson’s since being diagnosed nearly four years ago.

Alda says he shared the information because he was worried someone would notice a twitch in one of his fingers and tell “a story about this from a sad point of view, but that’s not where I am.” Neither my father nor I have to worry about being outed by celebrity magazines, but I can relate strongly to wanting to have control over the information about your own disease and how it’s used. Even if I don’t know about having that information myself, I know I’d think twice about providing it to someone else.

Because this collaboration’s focus on medical progress for diseases like Parkinson’s is more likely to resonate with people like me, whose loved ones suffer from the disease, I feel especially strongly that we’re the ones best positioned to call for greater transparency and more rigorous accounting of how this information will be used. Sure, people who use services like 23andMe offer up their DNA voluntarily. But that doesn’t mean that’s the end of the story.

Medical research does need to move more quickly, but it also needs to do so in a way that protects the rights of individuals – including their privacy. Before companies like GSK dig into our most personal information, they need to make sure clear safeguards and protections are in place, as well as a firm legal contingency plan for any breach of security.

They also need to address the moral problem of asking people to pay for the privilege of having one’s information used. 23andMe currently charges $139 on its website for its health and ancestry service. Users can choose to opt in or out of including their information for research, but they receive no direct benefit for doing so. Yes, choosing this option may help expedite the development of future treatments of diseases like Parkinson’s, but individuals are initially paying for a service that directly benefits two for-profit companies. If they were offering free testing in exchange for use of data, that might be more reasonable; as it is, however, buyers are offering up highly personal information that may or may not benefit the greater good but will certainly benefit corporate interests.

Additionally – and more pressingly – there is the concern of how much data will be available and how anonymous it will remain. Given the constant parade of information breaches in the news, from credit bureaus to social media, it seems only a matter of time before this kind of data, too, is compromised. GSK has already stated that part of the intended use is “to speed identification and recruitment of patients for clinical trials.” This sounds great, but it also sounds like a fine edge between anonymity and exposure.

In addition to its standard privacy policy, 23andMe and other genetic testing sites have agreed to seek individual consent before disclosing information. But this does little to allay concerns about data breaches from inside or outside the companies.

Of course, I want research to advance, and I’m happy to contribute to centers dedicated to this purpose, such as the Michael J. Fox Foundation. But giving unfettered access to this most personal data seems to me like opening a Pandora’s Box of unknown proportions. If anonymity cannot be guaranteed, then where does use of that information stop? While the law currently prevents refusal to provide insurance coverage for an individual who has a marker for breast cancer or ALS, we’re in a precarious place regarding care for those with pre-existing conditions. If such protection goes by the wayside, what would stop an employer from refusing to hire someone with a genetic predisposition that could compromise their future ability to work?

I have a friend with a degenerative disease who recently started a new job. I did not ask if they disclosed the disease to their employer, but I know that there is a likelihood that, if their condition worsens, it will affect their ability to perform. Then again, the impact of their disease may remain at its current level for years. Should they not be employed, contributing to society and actively seeking to support themselves, while they are able? Yet, if given access to that information, it seems likely that an employer would refuse to take on the burden of this person’s potential needs. As it stands, the ADA currently allows employers to offer insurance that does not cover pre-existing conditions; it also states that “an employer cannot reject you because of information about your disability revealed by the medical examination, unless the reasons for rejection are job-related and necessary for the conduct of the employer’s business.”

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    Still, how and when this information will be used worries me for my own family and for others. I don’t want my children to be scrutinized for their biological legacy, let alone for mine. I don’t wish that on anyone else either. I’m sure that some will see this as paranoid, but when you consider the advances – and breaches – we’ve seen in scientific development, maybe paranoia isn’t such a reach.