The 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.

Privacy of medical information threatened

I haven't been watching the House and Senate daily since stem cells were dropped from the agenda, but today I was reminded that's not a good thing to do. While you're not looking, Congress may slip something through you had no idea about.

This time it could be the privacy of your personal medical information (including results of genetic testing).

I received a notice from the Ethics and Health Law daily newsletter, which happens to come from Australia. The lead-in said: "Congress has latched onto legislation to create a national health information system: the Health Information Technology Promotion Act of 2005 (HR 4157)." and the source was given as Medical News today, 11 February 2006 (

Oddly enough, the bill in question was introduced in October of last year; it didn't reach the news, but did catch the eye of the Citizens' Council on Health Care (CCHC). According to the article,

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Reality check for stem cell research

The scandal in South Korea acknowledging that embryonic stem cell research reported from that country was all faked has extended to the US scientist who was part of the reports, Gerald Shatten, who has been reprimanded for his failure to take sufficient care in examining research he added his name to. The extent of the lies has undermined embryonic stem cell research in a number of ways.

The revelations started with concerns that Hwang's own laboratory assistants had donated eggs and that some donors had been paid for the eggs. These concerns are not as important to me as the false claims that the stem cell lines had been created from very few donated eggs. That was not true.

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Gene testing and the olympics

TURIN, Italy - Drug testing at the XX Winter Olympic Games will be more sophisticated, more refined, and more prevalent than it was four years ago in Salt Lake City, says TIM PANACCIO of the Philadelphia Inquirer.  He adds the following, and quotes Dick Pound, chairman of the World Anti-Doping Agency (WADA):

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Complete breast is grown from single stem cell

According to the Harvard University Gazette,

A complete, functioning breast has been grown from a single stem cell, by researchers in Australia. It was done in a mouse, but experts believe it won't be long before it happens in humans.. . .The stem cell breast project took five years to complete.

Kaylene Simpson, who set up the experiment before moving to Harvard Medical School, stated, "There were lots of technical obstacles to overcome and it was very difficult to attract funding at first."

One challenge was separating breast stem cells from other cell types in the breast. To do this, the group found marker proteins that recognize and bind to the surface of the mouse breast stem cells. The same markers, if they can be found in humans, would be needed to attempt to grow a new breast in a human. Simpson describes this work as follows:

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Genetic basis for Alzheimers

Genetic testing doesn't always involve DNA testing; in a recent study of the inheritance of Alzheimer Disease (AD), 11 884 Swedish twin pairs were studied. Twin studies are a classical way of determining whether a particular condition is inherited. Data for identical twins are generally compared with data for nonidentical twins. To determine the effect of environment, twins reared apart are often the focus of part of the study.

In this case, all twins were in the Swedish Twin Registry and aged 65 years and older. Of the total, 392 pairs had 1 or both members affected by AD. The result: 80 percent of Alzheimer's risk appears to be genetic. the other 20 percent is environmental. University of Southern California psychologist Margaret Gatz, PhD, and colleagues report the findings in the February issue of Archives of General Psychiatry 2006;63:168-174.

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Stem cell treatment of damaged hearts

Several newspapers from Australia have reported in the past several days about two men who have had radical heart surgery using adult stem cells. According to one article, both patients have been discharged from hospital and have experienced no adverse side effects. Their conditions will be examined in a month, then at 3 and 6 months.

Here's what happened. Both men were middle-aged and had previously had bypass surgery, but their arteries were still badly blocked. During an operation performed under local anaesthetic, doctors implanted 100 million of the patients' own stem cells into their damaged heart muscle. The cells were extracted from bone marrow; the articles do not describe whether the cells multiplied outside of the body before they were injected. The operations were part of a clinical trial; the articles do not state how many patients are involved in the trial.

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Why do people purchase a genetic test?

It appears from the results of the current genetic testing poll that the majority of those answering have either purchased a DNA test or would do so. Let's look at the possible reasons for purchasing such a test:

  • As part of a genealogical study
  • Establish paternity (for child support, "gotcha", "I don't want anything to do with you", etc.)
  • Establish connection to a particular group of people (American Indian tribe, African tribe, Caucasians, Asians)
  • Determine your probability of developing a particular disease
  • Identify a "genetic" condition/disease for which there is treatment (such as PKU, salt-sensitive hypertension)
  • Identify a condition/disease for which there is no treatment (Tay-Sachs, Down syndrome)
  • Identify whether you are a carrier for a particular disease/condition
  • As part of your overall health awareness and better living plan
  • Curiosity

What would your reason be? If it's one I haven't listed, please add it in a comment to this blog entry.

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What do you think a DNA test will tell you?

For one to several hundred dollars, you can have a DNA test done. Before you order that test, ask one simple question: what will you do with the results? Even more pertinent may be: what will the company do with the results?

The New York Times on Sunday presented the story of Georgia Kinney Bopp--a genealogist with a mission. Should you happen to run into her, keep your mouth closed--literally. Ms. Bopp travels with a DNA kit and can be very persuasive. Ms. Bopp apparently cornered a second cousin in Reno, Nevada, pulled out a DNA kit, and convinced him to give her a sample.

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Stem cell recipient walks

A man suffering from multiple sclerosis was treated with umbilical cord stem cells in an experimental treatment given by a hospital in Holland. According to the report in an online news item from Birmingham:

Within hours Mr Pear, who has suffered from MS for ten years, said he was able to move unaided, despite having once needing elbow crutches to walk.

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Does your physician know enough about genetics to help you understand the implications of genetic testing?

You probably only see your physician for short visits. It is unlikely that he or she will have time to explain the relationship of your genes to your health. Unfortunately, it is also unlikely that he or she knows enough about the genetic basis of disease to help you understand the details of particular diseases or conditions. A report from Case Western University presents this dilemma in an article, The Diagnostic Dilemma. They state the problem as follows:

Doctors will soon have an arsenal of new genetic tests to help select the appropriate treatment or drugs for patients. Will they know how to use them?

If you're lucky enough to have good health insurance--one that stresses preventive care--and you're interested in your genetic propensity for specific diseases or conditions, you will probably get more help from a physician's assistant. They often, in general, give you more time and are more recently connected to their formal schooling. However, a survey in late 2005 indicated that:

Allied health professionals are providing genetic-related services in clinical settings. However, sufficient instruction in genetic knowledge and skills is not being provided in their undergraduate and graduate training programs. (Assessment of Allied Health Graduate's Prepatation to Integrate Genetic Knowledge and Skills into Clinical Practice; J of Allied Health 2005;34(3):138-144.)

A better option would be a genetic counselor. Next difficult question--how do you find one? My first suggestion, as always, would be the Internet. Another option is your insurance company's help line. These are generally staffed by nurses or others specially trained to help you access information outside the physician's office.

Marie Godfrey, PhD

Genetizen's blog

Bush's opposition to "therapeutic" cloning as strong as ever

It took me a while to scan President Bush's State of the Union message for the item I received in a stem cell alert the day after his speech. Near the end was this statement:

Tonight I ask you to pass legislation to prohibit the most egregious abuses of medical research: human cloning in all its forms; creating or implanting embryos for experiments; creating human-animal hybrids; and buying, selling or patenting human embryos.

We can assume from this statement that creating new embryonic stem cell lines will continue to be prohibited using federal funding and that even more stringent laws will be passed if Bush's recomendations are followed.

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Mapping your mind may be more fun than mapping DNA

I’m not generally a person who reads the New York Times—partly because I would have to order it specially for my home in Utah and receive it a day late, but also because I don’t have a long-enough attention span to read the usually very long, studious articles. But today, one sent to me by a friend caught my attention: Scientists find gene that controls type of earwax in people, by Nicholas Wade, published January 30, 2006.

Besides my personal interest—my family all have problems with earwax and my mother was very surprised recently to find that she’s not deaf in her right ear, she just had earwax that needed removal—I liked this article because it prompted me to draw a Mindmap.

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Gene tests a waste of money

The following information comes from Ian Sample, a science correspondent for The Guardian, a British newspaper. To read the full article, go to,,1697962,00.html

The Natiional Health Service has a number of single-gene tests available. These tests, look for mutations know to be associated with specific diseases such as cystic fibrosis. The new tests--described by Sample--claim to measure a person's susceptibility to diseases such as cancer and Alzheimers. Sample quotes Zimmern and Khoury, who participated in recent meetings discussing genetic testing:

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Genetic testing and family relationships

A public television special on African-Americans included some small pieces on genetic testing as it is used to test family relationships. The Feb 6 issue of Newsweek has more and presents some visual aids. In addition, a live talk featured Claudia Kalb answering questions about genetic testing. Of the three, the Kalb live talk was the only one allowing public participation. Since I thought some of you might be interested, I am attaching a copy of Kalb's transcript here. Among other things, it gives us an idea of why people are so interested in genetic testing.  Note that the genetic testing discussed focuses only on family interrelationships and not on diseases or conditions with genetic components.

Marie Godfrey, PhD

Genetizen's blog

Insoo's letter on egg donation retracted by American Journal of Bioethics

The letter written by Drs. Insoo Hyun and Kyu Won Jung describing in detail the oocyte and somatic cell donation consent procedures developed for the stem cell research program of Seoul National University and published in the 2005 volume 5(6): W17 of The American Journal of Bioethics was formally retracted by the January/February 2006 issue of the journal [volume 6(1): W33]. According to the retraction notice by the editor, Glenn McGee, "Drs. Hyun and Jung report[ed] that they were led to believe that these consent procedures were used by Dr. Woo-Suk Hwang and his colleagues to enroll all of the oocyte and somatic cell donors who provided the research materials reportedly utilized in the derivation of eleven patient-specific embryonic stem cell lines (Hwang et al. 2005)." Hyun and Jung agreed that these procedures were not used and have agreed to a retraction of the letter published earlier.

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