The Genetizen

Genetizen

Advances in genetics and biotechnology are impacting society in provocative ways. The Genetizen is written by a select group of scientists, bioethicists, and healthcare professionals who provide you with expert analysis and commentary on many important issues.

Disclaimer: Opinions expressed in blog postings may or may not reflect the opinions of Geneforum. In addition, the content provided here is purely informational and not a substitute for advice from your personal physician.



Your stories--correction

To post a story on our geneforum site, you will have to register, using a valid e-mail address. We use your address only to confirm that you posted the story; we do not share your address with others.

We have had to take this action to avoid being spammed. We appreciate your understanding.

Marie Godfrey, PhD

mgodfrey39's blog

Share your experiences

The need to share our stories in the hopes of helping others is a strong value in many people. Some share their stories only with close friends and relatives; others are willing to share on television or in other media, such as magazines or newspapers. The popularity of the "Chicken Soup" books suggests that people like to read these human interest stories.

In addition to upbeat, positive stories, there are also many stories of difficulties people have faced. Often, these stories are told to show how people can overcome difficulties. Other times, they are told to warn others of the dangers of otherwise non-threatening actions.

read more | mgodfrey39's blog

Genetic discrimination bill active again

The following comes from a bulletin I received a few minutes ago from the Genetic Alliance. If you are concerned about the potential effects of genetic testing--whether for privacy or insurance coverage--you will want to check this out and make your opinion known.

Genetic Information Nondiscrimination Act Introduced in House!

The Genetic Information Nondiscrimination Act (GINA) was introduced in the House of Representatives as H.R. 493 on January 16. Over 140 original cosponsors joined sponsors Rep. Slaughter (NY-28), Rep. Biggert (IL-13), Rep. Eshoo (CA-14), and Rep. Walden (OR-2) in supporting GINA's introduction. House and Senate bill sponsors will build stronger support in their chambers with your grassroots help. Genetic Alliance is collecting letters of support from our community and to present GINA's House and Senate sponsors. You can simply customize a template letter and send it to us to deliver with all of the other letters. Please join us in this effort and take a few minutes to make your voice heard!

read more | mgodfrey39's blog

House passes stem cell research bill

On January 11, the House of Representatives passed the Stem Cell Research Enhancement Act of 2007 (H.R. 3) by a vote of 253 - 174. This bill requires the Secretary of Health and Human Services to conduct and support research that utilizes human embryonic stem cells, regardless of the date on which the stem cells were derived from a human embryo. It also places limits on such research based on ethical requirements.

Looks like the Democrats are trying to get things moving again. You may remember that the House passed a number of such bills last year, but none of them made it through the Senate. I'll keep following the progress. You can always make your own opinion known -- whether you support stem cell research in general, or wish to place limitations -- by writing or calling your representatives in Congress.

read more | mgodfrey39's blog

U.S. News and World Report on genetic testing

Another news magazine covered emerging health issues at the beginning of the new year. U.S. News and World Report had an article titled, "Unraveling Your DNA's Secrets." This article provides a relatively in-depth discussion of genetic testing, including the results of their independent test of genetics tests available online.

To investigate the quality and usefulness of direct-to-consumer genetic tests, U.S. News tried six of them. Three were the same type of tests used by doctors for celiac disease, hemochromatosis, and breast cancer. Three others–for Alzheimer's disease, depression, and glaucoma and macular degeneration–test genes associated with the diseases but aren't used in medical practice. Our testers were U.S. News staff members and their relatives. One staffer took a DNA sample from his 3-year-old dog, Tate, a corgi mix. We found that the value in diagnosing or predicting disease varies widely. Some could be helpful in making health decisions, while others could be worthless or even dangerous. And it's often hard to tell which is which. Our key findings:

read more | mgodfrey39's blog

Newsweek --what's next in medicine

The Dec. 11 issue of Newsweek includes a section on health for the future. The first section is on genetic testing. It gives a clean summary of how genetic testing has affected several families:

Genetic testing is transforming medicine--and the way families think about their health. As science unlocks the intricate secrets of DNA, we face difficult choices and new challenges.

The Bakers, concerned about Huntington's Disease, created embryos that were tested before implantation. The Monacos used genetic testing to spare a young child of the effects of isovaleric acidemia. Two women in another family chose to have their breasts and ovaries removed to avoid having these cancers. And a victim of early-onset Alzheimers has volunteered his genetic information to help others.

read more | mgodfrey39's blog

Personal DNA test

Here's an interesting test you might want to take. It really has nothing to do with DNA, but it does cover many aspects of your personality. I found it fun and you may too.

The address is http://www.personaldna.com/.

Marie Godfrey, PhD

mgodfrey39's blog

MSN visual DNA test

Here's an interesting way to spend some time. It's the visual DNA test being promoted by MSN (probably for advertising). Check it out at http://www.blog.orsym.com/17.html

Marie Godfrey, PhD

mgodfrey39's blog

Geneforum posting to Mendel's garden

As part of the regular outreach of Geneforum, we have posted one of our articles on the Geneforum model for gathering public input to the site known as Mendel's garden. You can find the posting by searching in Google for "mendel's garden". We submitted to the latest issue, number 7.

We expect to be posting a newer, more detailed version of our Geneforum model in the near future. Watch for it here at Geneforum!

Marie Godfrey, PhD

mgodfrey39's blog

Public values and genetics

Everytime I create a new blog entry, I am acting on values and opinions that are very personal to me. Let's start with honesty and integrity. Yesterday, I expressed my personal opinion that a local t.v. station's article on a new tool available to determine whether a person should have genetic testing for "colon cancer genes" was faulty because the article didn't tell me how to find that tool. I looked for information in links provided in the article and didn't find what I was looking for. So, I questioned the station's integrity. Today, I checked out the latest Google alerts on the new tool and went directly to the online Journal of the American Medical Association.

read more | mgodfrey39's blog

Check out your risk for breast or colon cancer before considering genetic testing

Having just completed a colonscopy--I was told that Medicare doesn't pay for the procedure and I'll be going on Medicare in a few months--I was naturally glad to hear that I am "normal".

Wondering what factors other than genetics might affect my susceptibility to colon cancer, I was immediately interested in an article from KSL.com, the website of my local newspaper. I won't send you to the article, because it leaves out the most important information--how to find the website with the "new web-based program [that] can help you find out if you should seek out genetic testing."

I checked out the Dana Farber link (www.yourdiseaserisk.harvard.edu) and found an interesting test for colon cancer--and others for breast cancer, heart disease, etc. I took the colon cancer test and found that my risk is below average. The test also told me what to do to decrease my risk. However, since there was essentially no mention of genetics, I may not have found the right site.

We'll see if anyone responds to my question to KSL. If I find out more, I'll let you know.

Marie Godfrey, PhD

mgodfrey39's blog

Do you have an opinion on financial compensation for women who donate eggs for research?

Yesterday, I heard from an old friend--Insoo Hyun, whom I interviewed quite a while ago for his opinions on the ethics of stem cell research. Insoo is in the Department of bioethics at Case Western Reserve University School of Medicine in Cleveland, Ohio. He recently had his personal opinion about oocyte (egg) donation published in Nature: Women who donate their eggs for stem-cell research should be compensated in the same way as other healthy research volunteers. Last week the International Society for Stem Cell Research(ISSCR) released draft international guidelines that do not expressly limit remuneration to women's direct expenses--that is, according to Insoo, they would allow "payment" for the women who "bear the burdens of hormonal induction for stem-cell research".

read more | mgodfrey39's blog

Genetic testing provides key to treatment

It's time to write positively about genetic testing!

While genetic testing available online may have many faults, well-controlled, clinically determined and supported genetic testing can have immeasurable benefits. A story in today's Chicago Tribune describes one such case.

Lilly Jaffe, 6, who was diagnosed with Type 1 diabetes when she was 1 month old, "now has the freedom to be a normal, active child. She can go to sleepovers or play dates without mom coming along to do blood sugar tests and operate her [insulin] pump. She can eat snacks without counting carbohydrates or testing her blood. The Jaffes don't even keep insulin in the house anymore."

read more | mgodfrey39's blog

Genetics Day on the Hill

The organization, Genetic Alliance (www.geneticalliance.org) is sponsoring a genetics day September 27 for people interested in talking personally with their representatives on two key issues: genetic testing and genetic nondiscrimination. Yesterday, I phoned in for an excellent teleconference--one of three planned this month--on plans for the day on the Hill.

September 27 is not a particularly good day for me--my husband's surgery was on July 27 and he never recovered from its effects. But, I am hoping plenty of other people will be available to take part in that event.

If you're interested, please check out the information on the Genetic Alliance site.

Two things I learned yesterday:

  • CMS (also known as the Center for Medicare and Medicaid Services, the government group that oversees laboratory testing in the US) has reversed its formed position and now sees no immediate need to set up specific regulations and oversight for genetic testing.
  • The Center for Genetics & Public Policy has done a study of 109 genetic testing services available online and will release a report soon. Since the GAO report focused only on 4 companies providing nutrigenomic services, more information is definitely needed.

More information will be posted when I learn it.

Marie Godfrey, PhD

mgodfrey39's blog

The wide, wild world of genetic testing

There's a very interesting piece from the New York Times, Sept 12, by Andrew Pollack. I copied his title because it is so catchy.

Pollack pulls together information from specific companies and from individual people, while including reference to the latest government announcement from the Federal Trade commission. I guess there was also a Senate hearing I missed in July, that I will have to check out. Anyway, Pollack includes the following information on the business aspect of genetic testing:

With a few mouse clicks, consumers can order tests that promise to tell them if they are at risk for particular diseases, to trace their ancestry back to the time of Genghis Khan, to help choose which antidepressant would be best for them, to identify the sex of their fetus as few as five weeks into pregnancy and to give advice on diet or exercise.

read more | mgodfrey39's blog