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Op-Ed: The Great DNA Ripoff? Donate your DNA swab to corporations

Helix, a company which provides these services and links directly to other service providers, also gets “information rich” coding. That could and probably does mean anything which can be turned in to commercial value of some sort. High value information could be worth billions.
In fairness, the Helix site does offer quite a lot of possible uses of DNA swabs. Many options are at least interesting, among the services provided by related companies. It’s worth a look at their site, for information alone, if not instant convincing.
You can get to access “genetic counselling”, whatever that means in practice, on whatever basis these services are provided. The problem is that these DNA-based services are all pretty familiar, like managing cholesterol, diabetes, etc. based on DNA information. There’s even family planning, like DHA for breast milk.
OK – Using DNA to do a thorough analysis of health and personal improvement does make sense. It’s inevitable that future science will use these methods much more than it does now, anyway. DNA is very useful for accurate identification of a vast range of possible health issues.
What doesn’t make sense is these services are provided outside the normal professional medical framework. There are things like Carrier Check, which deals with possible dangerous inherited genetic characteristics, but services are provided by whom? Who do you sue? Do you get medical backup if you need it?
What are the privacy implications? Where are the medical ethics? You can’t use your own family doctor. You have to use the service provider’s doctor/ genetic counsellor.
Infant technologies and obsolescence
The other issues are unavoidable – Obsolete science and comatose laws.
Science changes, and so does scientific thinking. Yesterday’s whizzbang solution is tomorrow’s malpractice suit. Current information is going to get old, fast. The problem is that scientific thinking hasn’t had time to catch up with assessing possible problems.
Gene tech, notably CRISPR, (genetic reprogramming which is inheritable) is way ahead of the law. That’s driving some geneticists to despair. They’re demanding action on CRISPR and its likely descendants. There are no real laws outside basic medical practice laws which can address any problems. There are also likely to be no therapies, no fixes, for genetically based mistakes.
Brave New What?
DNA is now a commodity in the marketplace. If that gives you the shudders, so it should. The new frontier for getting DNA is based on the theory that genetic information translates in to services for the public.
The question is what is the value of those services to those providing them, just as much as those receiving them. Why this sudden eagerness to get as much DNA information as possible, on such a broad brush palette?
This is the Age of Crackpots, remember? There’s no reason to trust anyone or anything without some hard, unbreakable terms of service protecting service users.
Meanwhile – Does it all sound a bit half-baked? It is. Giving away your DNA information may not be a very good idea at all:
• What if some nutcase US employer wants DNA excuses to fire people?
• What if DNA information can be used for involuntary gene manipulation?
• What if some future fool tries to classify people and run their lives based on their DNA information, and there’s your family’s entire evolutionary history, right there?
• What if DNA is used for “genetic bigotry”?
• What if DNA information can be weaponized? As far back as 20 years ago, I remember someone talking about genetic weapons which could target whole groups of people.
• What value is the “rich information”? Who does it benefit? Who gets rich? Obviously not the donors, in this model. There’s no way of knowing what information, patents, and how many billions of dollars this info may be worth.
The world has every right to be highly skeptical of any service where lack of safeguards and privacy risks are so obvious. The science is contaminated with monetization and association with giants of global grief like Monsanto, et al. Science is causing a lot of problems, as well as solving them, simply through this naïve approach to how new discoveries are used.
Bottom line – High levels of protection for service users, and laws to go with it are the minimal acceptable standards. Would YOU trust your DNA information to just anyone, with no protection whatever? Based on sales spiel? Why?

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Written By

Editor-at-Large based in Sydney, Australia.

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