ion-proton-sequencerThe cost of sequencing a whole human genome has fallen dramatically to around $10,000 from the original price of $1billion. Though full genome sequencing is still out of reach for most people, many services.such as 23andMe, will sequence parts of your genome scientists believe to be related to certain disease conditions, and give you a report of your risks along with information about your genetic ancestry.

23andMe works like this. You get sent a small tube in the mail, you spit into it, and send it away to be analyzed. That sample of saliva holds a few of your cheek cells, each of which contains your entire genome—all the DNA that makes you, you. A few weeks later after the tube arrives, 23andMe sends you back a personalized interpretation of your DNA. Services like 23andMe can unpick your genome to discover information on a range of traits. For example: how you react to certain drugs; your risk of developing particular diseases; what characteristics you might pass on to your children; and even elements of your physical make-up. In a few weeks, you will get an e-mail directing you to a website where you can view the results.  The cost of this service is $99.

The company has a research arm which uses the genomic data collected for medical research purposes and you can volunteer to share your genetic data with researchers. There are, however, definite privacy concern around these personal genomic services. If you haven’t taken a genotyping test, for now, the only place your genome is stored is in the nucleus of each of your cells. However, once you have used a genotyping service, your genetic information is also the property of the company you have sent it off to. It is no longer under your sole control, and who your genetic information gets shared with is now at the discretion of the provider. Also, 23andMe and rivals will have to hand over genomic information if the appropriate legal requests are made, for example, in criminal cases or at the behest of government agencies.

There are other interested third parties who might have an interest in your DNA.

Health insurers - For health insurers, knowing whether their clients have a greater likelihood of developing a condition that could bring years of expensive medical treatment would have a clear benefit.

Other insurers - If researchers discover a predisposition to risk-taking behavior is associated with a certain gene sequence, then home or travel insurers could raise the premiums of those with that potential in their genes.

Employers - Similarly, employers could request the sequence of an employee or potential hire to work out whether they’re likely to remain in good health during their tenure. While there’s currently legislation in some parts of the world that forbids discrimination on genetic grounds, given how often legislation caters to the interests of commercial companies rather than the electorate as a whole, it is not unreasonable to imagine that this won’t be the case for long.

Medical companies - Another challenging question with the advent of genetic sequencing is just how much of our DNA is really ours? Having discovered a mutation that causes, say, a higher risk of bowel cancer, is a company entitled to patent it? Some companies argue they should be—that having spent time and money discovering the mutation and so enabling tests for its existence to be developed, they should be allowed to patent it in order to make their money back. Others argue that such mutations exist naturally in the human body and that if any patent were to be granted, it would be to mother nature, rather than a commercial interest. Courts in the U.S. have upheld this view, but in some countries, such as Australia, courts have ruled in favor of commercial interests.

While companies like 23andMe attempt to “anonymize” your genetic data by removing your name and contact information from it, this may not be much of protection when full genome sequencing becomes affordable, since our DNA is essentially a unique genetic fingerprint.

Our experience with identity theft and unwanted sharing of data on social media have taught us that allowing sensitive personal data to be used by others can have nasty consequence.  Personal genomic sequencing offers the promise of new insights about ourselves and new treatments for genetically based diseases.  But we need to be aware of the dark side of that shiny promise.

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