As you say, human nature being what it is, the opportunities for abuse of the tests and test results are myriad.

Couldn't these tests potentially be confidential? That seems likely. Privacy issues are important when it comes to health issues, and I think there is a certain amount of respect for that.

RockDoctor funny you bring up "myriad" look up Myriad Genetic's BRAC screening test for breast cancer, and all the trouble they got in for marketing the test without providing clinical utility a few years back.

In my opinion, rules against discrimination are already on the books barring insurance companies from denying coverage. Genetics are inborn, like your race or sex. Currently companies cannot deny you simply for being a "black male" or a "white female" even though statistically they will use more healthcare during their lifetimes. I believe genetic tests would fall into these categories, may be a basis for raising premiums but not for denying coverage. After all, AT RISK of having a condition is not the same as already having said pre-existing condition.

Nothing is 100% confidential. This information will eventually be used against some of the individuals who were tested. Health insurance companies routinely try to get info about patients they can't get from the doctors. My daughter has several health problems and for a while a 'nurse' from Blue Cross Blue Shield called ever so often trying to see 'how she is doing' and how things have been ' and what are the doctors saying' blah blah blah. I always told her I didn't want to talk to her and to please stop calling. Finally I had enough and told her I didn't trust the company she worked for and she was asking me questions they weren't allowed to ask my daughter's doc. They were snooping around in the guise of a well meaning nurse, a 'free' extra service BCBS provides their 'clients'. She said she wasn't required to give her 'notes' to anyone but I asked her if she could guarantee these calls weren't recorded by the company. She had no answer for that. Just kept saying 'I don't record anything'. I told them to stop calling or I'd get a restraining order. No more calls since.
As to people being more proactive if they get positive gene test results? Buffallo Chips! We all know how obesity affects our kids or endless screen time etc and what do we do about it as a nation? We ask them if they want coke or milk for dinner and feel we've done our best. People know that obesity leads to metabolic disorders, cardio-vascular disease and cancers and yet our kids are getting fatter by the week.

Wow, Hedwig, those calls from Blue Cross are scary. I haven't experienced anything like that, but I believe it.

I have to disagree with you though on the issue of whether people would be more proactive if they new, for instance, that they were genetically predisposed to diabetes. Lots of people eat more sugar than they should and don't get diabetes--that's why so many people are tempted to test fate. But if they know that diabetes is likely to be in their cards, that's potentially a different story. Think of the people who survive a heart attack and then are scared into changing their lifestyles. That's on a different scale, obviously, but I think that it follows the same basic principle. People think that things won't happen to them until they do. Or very possibly if science tells them that they probably will.

prevention is important, but I believe that improved diagnostics are needed first to differentiate and group patients based on their specific needs, followed by cost-effectiveness studies. This all takes more funding into human genetics/personalized medicine, proteomics, metabolomics, and even basic education in math and science at an early age. Then we can target prevention programs and tailor them so patients receive the most benefit at the best cost.

Hmmm, all of that talk about "cost effectiveness" makes me nervous. How about if we put the benefit to human health first, and then fine tune the finances later. Of the health issues that can be targeted through genetic testing as having an increased likelihood in an individual, there are many that we know plenty about and have prevention programs in place for. There's no need to start from scratch there. However, I do think that doctors need to be involved. Unless the test results can be translated into language that makes sense and is useful to the general public. I just don't think that it should be up to doctors whether or not these tests are completed. I feel that we are entitled to whatever information about ourselves that we want (and can get).

Stacey, I feel compelled to comment on your post. I also have an autoimmune disease. I live a very full and happy life. But it wasn't always like that. In addition to the physical pain and suffering my disease brought, I suffered horrible mental anguish after learning my life was never going to be what I thought it would be. My ex-husband even declared that I should never have children because I would pass on my tainted genetics. That's why he's my ex.

But my life is good, maybe even because of all the struggles I've had to go through. But when it comes to my future child, you better believe I'm going to want to have them tested to see if they have the markers. Sure, it won't be definitive on whether they will or won't develop Ankylosing Spondylitis. But if they have the marker, I can prepare that child, not only physically, but mentally, for what their life might be. I would want to spare my child from the grieving for the life that will not be, and obviously live by example of all the wonder that life still can be. Forewarned is forearmed in my opinion, and it's a very personal opinion for me. Yes, I know some people won't agree with me, but what parent doesn't want to spare their child of some of the pain they have had to go through?

My best wishes for a happy life for your daughter. Her life will be different, but there are so many of us auto-immuners out there that can attest to life still being wonderful and fulfilling. And that's what I would want to pass on to my own child.

Stacey - look into research being done at MASS General on a drug for diabetes (T1) which is also auto immune. There is a vaccine for TB in the EU which seems to have some serious reduciton of AI diseases within that vaccinated population - may be woth looking at.

NicoleC--in case you check back, thank you so much for your response. I appreciate very much the wisdom of your experience. We would like to spare our children the struggles that we have had, and I do agree that forewarned is forearmed. I have a neurologically based chronic pain problem, and it took me so, so many frustrating years to get the correct diagnosis and appropriate treatment. All of the uncertainty, and the inability to get effective help without understanding what was wrong--I would hate for my daughter to go through the same thing. Coincidentally, my closest friend has finally been diagnosed with Ankylosing Spondylitis after 15 years of symptoms! It makes me furious to even think about it. Seems like that shouldn't happen. I guess that's one of the reasons why I lean towards genetic testing. There are so many things that are so hard to diagnosis--it feels like we need all the help we can get. Best of luck to you, NicoleC! I'll do my best to remember your positive message. :)

And thanks for the heads up, FlyOverMe. I'll look into it. Sounds interesting.