I was able to attend a panel discussion recently about personal genetics and open access medical records. The panelists were the top minds in the field and I found it to be a very sobering experience. I will say that I applaud their altruism and now that the box is open we can't close it again, so we have to deal with it, but I fear that for the foreseeable future personal genetics (PG) will do more harm than good. The general public sees PG as a panacea, and it's not. There are just too many uncertainties about what it all means, and whether or not knowing about risk factors will allow people alter the outcome.
The discussion about how information empowers the patient and how protections we put in place now assure safety. I admit that I am cynical but information is only empowering when you can use it for leverage. If we outlaw genetic discrimination then the insurance companies will just jack up the rates to match the risk profile then give good gene's discounts. Think about it innocent people rarely take the fifth, so if you've been sequenced and don't want to share the information what are you hiding?
Governments come and go, so the protections put in place now can disappear over night in a police state or if the company holding the info off-shores to a country without these protections. Also, anti-discrimination laws are very hard to enforce. Discrimination doesn't occur at the level of governments and companies, it occurs at the level of individual, and no law can prevent your kids from being teased because they come from less genetically superior stock.
Once you lose control of information it can never be secret again.
(Side note: I think the information people put on Myspace and Facebook will be what the young people of today grow to regret as they get older, the way people from previous generations regret tattoos when they are 40, 50... 80.) So think long and hard before you post you lab test results on you blog. Because when you are older you, your spouse, assorted family, kids, might not want the world knowing those things about you.Now that we have opened the box, we have to live with what comes out. As in the case of Pandora the box contained hope, but it also contained a lot of terrible things too. Imagine a future a where there is genetic blackmail, and I'm not just talking about Russian mobsters getting people's DNA and blackmailing women over paternity tests. I am talking about people's deepest secrets being held for ransom, by friends, strangers, the guy you told when you got drunk that time. "Who would marry you if you are at high risk for Alzheimer’s or whatever? Well for a “reoccurring fee” no one needs to know."Think about it how bad it is when a cybercrimal steals thousands of credit card numbers, imagine what happens when they steal thousands of people medical records. You can cut up your credit card and get a new number, but not your medical records or DNA sequence. It will happen, and it's foolish to pretend it won't.
Then there are sham therapies and what I call “sequence spam”. Right now PG technologies are in the hands of truly gifted and altruist people and companies, but that won't always be the case. There is a LOT of money to be made in the realm of personal genetics and medicine, and I can already see the business models for questionable firms to offer "free" for a small fee sequencing to determine, which of their as seen on late night TV weight loss, ED, etc products will be best suited to you. If they actually do the tests then have your information and your consent. As they roll out new "natural" drugs they can hit you up again, and use scare tactics. You get a phone call or certified letter saying you are at an increased risk for pancreatic cancer, which is a death sentence. However, if you take our product you everyday for the rest of you life at the low cost of $2 a day, you can "mitigate" the risk. But you should see our medical specialist for a scan and treatment, since you don't want to tell your insurance company about your "problem", but that means the visits and treatments are cash only. Worse still would be to prey on parents fears. "Mrs. Johnson, we have some disturbing news, from your results we have determined if you have a son, there good chance he will be short, retarded, sickly, or whatever. However we have something that will allow you to treat him before it becomes a problem..." That way if nothing bad happens the "treatment" appears to be working.
Even if you don’t share your personal information, sequence spam and social engineering can get you to reveal it. Think of the emails you get for V1a gra and other “drugs” now imagine you are getting email saying that some drug or another can improve some aspect of the mutation at site X’s life. You buy it, and now you’ve revealed that you likely have that mutation, then through linkage studies the seller can calculate the likelihood you have other mutations, which might not be as innocuous. Or my favorite since it is a twist on a classic. Mass emailing saying “You’re genetic tests show that you are the heir to a fabulous fortune, but we will need a payment to cover legal fees and a sample of your DNA before we can send you the money.” Heck I am surprised they haven’t already started doing this with the info from genealogy sites.
I realize I just provided a how to guide for tomorrow's biomedical criminal, but I doubt I am the first person who figured out how misuse medical or sequence information, so I take no responsibility for the actions of others. (I will happily take this post down if law enforcement asks me. I would also be happy to talk with the FBI or CIA about the potential for biomedical crime.)
I believe it is important for the well intentioned and naïve to see what they are enabling, since in a few years they will be seeing on the news. We might even have to wait for genetic crime to see the social implications of PG, the backlash after the first suicide of a PG company customer will be massive. I don’t believe PG will cause us to end up in a GATTCA like world, but the potential for bad things to happen as a result of this knowledge is there.
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