The problem isn't in giving people access to their genetic code, it's in the interpretation. If you don't do this right, then you can cause severe distress to someone.
What if a company errantly told you that you had the mutation that causes Huntington's? That would cause severe emotional distress.
What if they told you that you had a lower than average risk for heart disease? Then based on that information, you eat lots of fatty foods for years, relying on your genetics to save you and you end up having a heart attack because of it.
I know this isn't popular, but at this point, there just isn't a good way to offer these services without the input from a medical professional/genetic counselor. People need to have access to their own data/test results, but the delivery of the results and interpretations definitely needs to be regulated. I don't think that regulation would be the death of the personal genomics industry - it would just mean some new rules to play by.
Let's say you check your blood pressure at a machine available in a grocery store. Should the store be held responsible based on your interpretation of the results? Or if you use a blood glucose test? Or a thermometer? Or any other device used for home medical treatment?
These companies aren't dispensing medical advice. They are simply providing a service that decodes your personal genetic sequence and allows you access to that information. Why should I need to jump through hoops to have access to the ONE thing in the world that is provably and irrevocably mine?
Also, no matter how hard you try, you can't regulate intelligence. In 1000 years, stupid people will still be doing stupid shit.
Can you tell me which is the mutation for huntingon's? If not, someone is going to have to tell you where it is and what the 'bad' genotype is. That interaction should be regulated.
I'm all for people having access to their data, but blood pressure is an easy concept for people to get their heads around. Interpreting it isn't hard. And we've been using it clinically for close to 100 years. Genotypes are different. You don't ask people to read and ECG. Sure, you can see it, and you can have a doctor explain to you what it means. That doesn't mean you should be able to go to a drug store, hook yourself up to electrodes, and decide that you don't have an arrhythmia.
Mutations and known sequences are factual, unchanging pieces of knowledge that I could research and check against my own sequence information if I had the time and desire. So, why not allow me to pay someone else to do it automatically. There is no medical interpretation being made. Matching sequences is a completely objective process.
If I want a medical professional's interpretation of the results, I can go see my doctor with my sequencing.
Dispensing medical advice without a license is already a heavily policed offense. We don't need more redundant laws on the books.
The link that the article pointed to as a good summery: http://www.genomicslawreport.com/index.php/2011/03/11/the-fd...
states that he doesn't think that any regulations will be implemented that prevent consumers from getting their raw genetic information. That it is primarily about dispensing medical advice, the protection of information, etc.
What if a company errantly told you that you had the mutation that causes Huntington's? That would cause severe emotional distress.
What if they told you that you had a lower than average risk for heart disease? Then based on that information, you eat lots of fatty foods for years, relying on your genetics to save you and you end up having a heart attack because of it.
I know this isn't popular, but at this point, there just isn't a good way to offer these services without the input from a medical professional/genetic counselor. People need to have access to their own data/test results, but the delivery of the results and interpretations definitely needs to be regulated. I don't think that regulation would be the death of the personal genomics industry - it would just mean some new rules to play by.