Genetics Interview #22: Amy Tenderich of Diabetes Mine

Apologies to Amy Tenderich of Diabetes Mine for not having this interview published yesterday as scheduled. A star blogger like her would never have let this happen!

1. Congratulations on your LillyforLifeAchievement Award for Diabetes Journalism! We’ve reached a point in the blogging community where excellent health and medicine bloggers are being recognized for their efforts. At the same time, spammers and other disreputable operations have learned to harness the power of blogs as well. How would you recommend new readers of health blogs discern the difference between the two groups and how should new writers of health blogs present themselves?

New readers have a lot to enjoy these days. But as they explore, they need to consider the source: Who’s behind the blog? Are you required to register? Does the blog include links and references? Is it freshly updated? Unfortunately, some “blogs” are indeed simply a front for money-making schemes. I would steer clear of any “blog” that’s not authored by one or more recognizable individuals.

Keep in mind that this is the era of “full disclosure” – and that goes for commenters as well. It’s OK to remain anonymous (withhold your real name) when you post a comment, but you must provide a valid email address or your comment will likely be removed as spam. Not doing so is the equivalent of heckling a public speaker while hiding in the bushes, rather than confronting the person with legitimate questions or criticism.

To my mind, new blog authors need to lay their cards on the table: Tell readers up-front who they are, what their credentials are, and what is their motivation for writing about their particular topic. Then let the public decide what’s good quality or bad; it’s the ultimate democratic model.

2. In August, you wrote about the Cellf at-home nutrigenomic DNA tests. If their main objective is to provide information, it could be extremely motivating to some people. For people with diabetes who already have to be careful with their diet and lifestyle, what value do you think a nutrigenomic DNA test could provide?

Actually, the Cellf test products are currently under investigation by the Government Accountability Office (GAO) for potentially providing misleading and medically unproven results. So much for do-it-yourself gene exploration! [Editor’s note: There are different direct-to-consumer DNA tests available including the more questionable nutrigenomic DNA tests and tests for disease genes or other better understood genes. More on genetic testing from Genetics and Health.)

As a person already diagnosed with diabetes – working hard every day to stay alive with glucose testing and injections – I don’t see any value in additional nutrigenetic testing, other than to increase my worries and paranoia. But for “couch potatoes who are flippant about their health,” some experts assert that tests like this might be useful simply as motivators for better lifestyle choices. (I’m not so sure; see question No. 5)

The paranoia argument also applies to genetic testing of my children to identify their risk of developing diabetes, by the way. I wouldn’t do it voluntarily; knowing that our kids had a high risk on paper would only make my husband and me crazy.

3. Along the same lines of do-it-yourself, there’s been some talk of creating online patient communities where patients can compare treatments. What do you think are some of the risks and benefits of patients striking out on their own and possibly not sharing with their doctors all that they’re finding and experimenting with?

Personally, I don’t believe in Faith Healing. I think it’s kind of dumb – or worse, dangerous – to bypass our best medical resources: fully trained physicians and other healthcare professionals. You can do yourself and your loved ones harm by avoiding the sophisticated, clinically proven treatments available today.

On the other hand, there are many alternative/holistic treatments that can be helpful. I just wouldn’t recommend omitting your doctor’s care and advice altogether.

4. What thoughts cross your mind when you hear of yet another study that has found a “new gene” for diabetes, either for type 1 or type 2?

First reaction: Spare me! With diabetes in particular, the “media buzz” is always rampant. Every few weeks we read of some potential new “cure” that’s just around the corner. Cynicism becomes a defense mechanism, against getting our hopes up too high. One activist I met who’s had the disease for 44 years (since 8 years old) summed it up this way: “We used to go around saying there’ll be a cure by the year 2000. Now I just keep charging on…”

5. So would you say the media has over-hyped the latest genetics research as the editors of the British Medical Journal believe?

Research with promising results is almost always over-hyped, such as the recent flurry around Avandia (rosiglitazone) – which looks like it may help people with “pre-diabetes” avoid developing a full version of the disease.

Naturally, early intervention is a good thing. But as the BMJ editors point out, people in general are pretty lazy. Some kind of “pre-risk” diagnosis or test result usually isn’t enough to motivate them to change their lifestyles. And the headlines sure aren’t doing the trick either.

6. What do you think of preimplantation genetic diagnosis to select embryos free of specific disease genes, including diabetes susceptibility genes (although no one’s proposed this for diabetes yet)?

Obviously, stem cell ethics is a touchy subject. The “Big Brother” concept of crafting a super-race based on cherry-picking the best gene pools is just plain creepy. On the other hand, wouldn’t we all jump at the chance for 100% guarantee that our children would be free of debilitating diseases? Yeah.

The core question is: Does embryo selection simply help us wipe out these diseases, or could it possibly have other health or societal consequences? The answer may be as ambiguous as the very future of the human race.

Thank you, Amy! Your contributions to the health of people with diabetes is undeniable and all of us appreciate your tremendous efforts.

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    • Rebecca Taylor

      Your readers know how I feel about PGD. Amy brings up a great question: “Does embryo selection simply help us wipe out these diseases, or could it possibly have other health or societal consequences?”

      My answer: Embryo selection does wipe out the disease, by wiping out the embryos that carry the gene. I say, let’s worry about curing the disease, instead of discarding the embryos who may have it.

    • Hsien Hsien Lei, PhD

      Rebecca: I’m still really conflicted about PGD. Truth is, selection based on one or a few disease genes doesn’t guarantee a disease-free, healthy life. I wonder sometimes if it’s a worthwhile endeavor for many families.

    • Rebecca Taylor

      I fully understand the desire to have healthy children. Everyone wants that. But I see PGD like I do eugenic abortion: “curing” the disease by getting rid of those who have it. Its like throwing the baby out with the bathwater.

      To put it in another light. I test many pregnant women for cystic fibrosis carrier status. The idea is that if mom is a carrier and dad is a carrier, then an amino is performed to see if the fetus has CF. Of course, abortion is always an option.

      I was surprised to learn that some in the CF advocacy community are against carrier screening and testing fetuses for CF. Why? Because it focuses on getting rid of the genes, not curing the disease.

      With every eugenic abortion and PGD screen, not only does their funding and their hopes for finding a cure diminish, but the likelyhood of their having to justify their existence increases. Sound extreme? Maybe. But there was a recent case of a woman who was told by her insurance company, “Abort your baby that has CF or we won’t pay for any treatments.”

      What starts as the choice to have the “perfect” child quickly becomes the duty to have the “perfect” child.

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