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.



Ethical views from Korea

I found an interesting article this morning in a Korean newspaper. In it, the interviewees discuss the freight train known as embryonic stem cell research. 

Last year, cloning pioneer Hwang Woo-suk stunned the world by replicating human somatic cells, a feat acclaimed by many as making a huge stride forward in the history of medical science.

Not everyone, however, saw the landmark research in a positive light. On the contrary, many remain apprehensive, wondering whether the finding will take us to utopia or it's opposite, dystopia.

The uncertainty is even more frustrating when we humans find ourselves seemingly unable to stop or control the technical drive.

The book Discussion is a record of conversations between two veteran scholars from different backgrounds, one from humanities and the other from biology, as they seek answers in this technocratic, but ethically anemic, society.

Although the article refers to Hwang's work, other labs are close to producing "embryos" from unfertilized eggs and adult DNA. Is it too late for interested people to stop the mad rush forward? Do we want to stop it? Look at the full article at http://times.hankooki.com/lpage/culture/200511/kt2005111820072210980.htm 

Geneforum's second interview with Insoo Hyun (the ethicist working with Hwang) on the ethical considerations of embryonic stem cell research and views of Koreans will be posted soon--watch for it.

Marie Godfrey, PhD

Genetizen's blog

Do you want to know your future?

Today I am beginning a new subject for the Genetizen blog: genetic testing. My postings will include discussions of what types of genetic tests are available, what kind of results you might expect to see, how reliable the tests are, and how the results of these tests might affect your life--and the lives of family members. I'd like to start with a somewhat long article sent to me by a genetic counselor. Here's an excerpt from Pre-vivor, a personal view into the strange new world of genetic testing, published online 13 November 2005.

Scientists are identifying a genetic component to more diseases every year. Already, they have found specific mutations that put some people at high risk for breast cancer, colon cancer, heart disease and Alzheimer's, to name just a few.

What's it like to get this kind of crystal-ball information about your medical future? I was given a small glimpse last year, when -- as a completely healthy 46-year-old -- I learned I had a genetic mutation that gave me very high odds of developing breast and ovarian cancer.

My husband was right that our lives had just changed, but not in any way that I understood or could articulate. This wasn't a cancer diagnosis, but it was, what? A diagnosis of the statistical probability of cancer? I had no idea how to respond. It was profoundly disorienting. On the one hand, I felt suddenly doomed. I felt like there was a time bomb ticking inside me. On the other hand, I was completely healthy -- as healthy as I'd been five minutes earlier. Was I doomed? Was I healthy? Which was it?

The ripple effects can be more complicated than you might think. My sister decided to get tested for BRCA too after I received my test results. Her test was negative -- good news, no mutation. But ironically, her good news ended up being far more devastating than my bad news.

You can read the full, very powerful article, at http://sfgate.com/cgi-bin/article.cgi?f=/c/a/2005/11/13/CMG47F9SC81.DTL

Marie Godfrey, PhD

Genetizen's blog

Hwang and Shatten--ethical conflict

In the news is Dr. Shatten's separation from the World Stem Cell Hub and other activities being carried on by Dr. Hwang--the "pioneer" in creation of embryonic stem cells from humans. Whatever the truth of the situation, the ethical focus embraced by Insoo Hyun remains solid: consider ethics before and during research. Insoo's interview (available on this website) included a warning: if you don't pay attention to ethical considerations in your work, your work may be severely hampered.

I believe embryonic stem cell research--at least that conducted in Hwang's facilities in So. Korea--will inevitably be set back by the charge of ethical improprieties, whether or not they prove true.

We want cures for diseases and conditions such as spinal cord injury, but not at the expense of honest, ethical science. In this situation, and in deciding whether embryonic stem cell research is appropriate, ethical considerations are never to be tossed aside.

Marie Godfrey, PhD

Genetizen's blog

Wish and WSCH--the difference is a human being

When the World Stem Cell Hub (WSCH) in Seoul, Korea announced that it was accepting applications from people interested in participating in stem cell research on spinal cord injuries and Parkinsons, the website was flooded with applications. I want to introduce you today to someone who is among those who applied to WSCH.

Steven Edwards describes the emotional aspects of his application in Stem-cell Hopes Hit Home, published online in Wired Magazine, at http://www.wired.com/news/medtech/0,1286,69470,00.html. "I knew my odds were slim. When the call for subjects came out, the website for the World Stem Cell Hub crashed under the traffic load. If I volunteered, I would be one among thousands" he tells us.

He views the implications of a embryo made with his DNA and wonders, "What would the embryo that was used to cure me be like, if it were instead allowed to develop?" This is a question much more personal than asking whether an embryo in a test tube is human. Would he be committing a form of suicide or just using part of his own tissue to create cells that might repair his paralyzed body?

What would you think, if WSCH could fulfill wishes? Please check out Steven's article.

Marie Godfrey, PhD

Genetizen's blog

Patients interested in studies need to be fully informed

The World Stem Cell Hub has announced a call for patients with spinal cord injuries or Parkinsons to potentially participate in a clinical study. PLEASE, if you are interested in this, remember that those who are chosen will have to travel to South Korea (perhaps even for initial interviews), donate a skin sample (this may be the simplest part), wait for development of a stem cell line from that skin cell sample, and then wait until a treatment study is approved. To be acceptable to the scientific community, the study will have to be controlled in some way (with a "placebo"-like treatment not expected to have benefit). The clinical study itself is some time off and will probably involve long-term followup after treatment. I am encouraged by talking with Insoo Hyun (see intreview on this site) that the process of interviewing candidates will be rigorous, so that those who choose to participate will understand--as much as possible--what's involved and what outcomes are possible--including dangers to themselves. Women who volunteer to donate eggs for the somatic cell nuclear transplant process will also be carefully screened and informed of what their participation means. Cures for spinal cord injuries and for Parkinsons are most likely a long way off. We need to be hopeful, but cautious and fully informed. Marie Godfrey, PhD
Genetizen's blog

Photos of fertilized egg cell and blastocyst

A while ago, I promised photographs to go along with the survey on stem cells conducted recently and reported here. Unfortunately, although I recieved copies of the photos used for the survey, I did not receive permission to use them here. I also found that other photos available on the web are either too old (ie, beyond 5-7 days) or permission to use them is explicitly denied. I have assembled some photos released as part of the President's Council Statement on the Bioethics of Stem Cell Research and attached them to this message. For a fuller discussion of very early embryonic development, I suggest the following website: http://www.visembryo.com/ The photos available at that website cannot be copied. Marie Godfrey, PhD
Genetizen's blog | 1 attachment

Is media hype good?

I was just reading an article on a 37-year-old woman in Korea, who received umbilical cord stem cells as treatment for her spinal cord injury. The author of the WorldNet article stated that he had put off publishing about the experiment until he had seen the article published in a peer-reviewed journal. The peer-reviewed article comes from a journal in Greece, known as Cytotherapy. The abstract is short and the full article is available only to subscribers. Yes, the experiment is interesting, and I have been working hard to determine how the woman is doing now. I'll write more on this later. Because today, the parts that interest me are two: 1) The media didn't pick up on this one when it occurred ONE YEAR AGO and 2) The misspelling of the journal title in one article got picked up and reprinted in a number of media outlets today. I don't know what outlets the Korean clinic used a year ago, but the world was interested in sensation at the time--cloning human embryos--so not many noticed. Luckily for us, that means we may be able to learn how dramatic the recovery really was. Today the battles are definitely engaged among supporters of adult vs. embryonic stem cells. So, the FDA approval of a clinical trial for the transplant of fetal brain cells into six children suffering from Batten's disease makes headlines. The word, FIRST, catches the eye. Could it also be that the research is connected to one of the companies whose advertisement appears on your screen when you read nearly anything related to stem cells? I contacted one of those companies once to find out where their fetal cells come from. They quickly stopped responding to my questions when they learned I was not a potential customer. Money, media, breakthrough advances in science--all connected. Did you know that one of the reasons many U.S. companies publish in a peer-reviewed journal and in the media simultaneously has to do with the Sarbanes-Oxley law and the Securities and Exchange Commission? A publicly-held company cannot release information that may affect their stock price until an approved analyst has checked the company's data to see that they have the support to make their claim. So, a company has two choices--publish much later in a peer-reviewed journal (and perhaps fall into the cold fusion category of being disproved later), or wait until the article is ready for release and then let the media know about it. Either way, what we read is generally moved first by the media. And the other item--misspelling of the journal's name. Google, of course, is smart enough to ask you whether you mean xxxxx (correct spelling). But the repetition of any unusual term in its incorrect spelling gives us an idea of how often something sensational can be picked up and copied all over the place. Be critical, people, don't always rely on one source for your information. And use the exciting power of the Internet to help you sort through the validity of claims you read. Through places such as PubMed, an index of medically-related journal publications, you can quickly check something you see in the "normal" media. And, if you are someone affected by a condition--such as a spinal cord injury--stay in touch with your support group. They generally look carefully at media reports and try to determine their validity. Marie Godfrey, PhD
Genetizen's blog

H.B. 810 "dies" in U.S. Senate

HB 810 passed by the House to lift some restrictions on embryonic stem cell research--specifically to allow use of embryos created by in vitro fertilization and otherwise intended for destruction--will not be discussed in the Senate. Although some of the other dozen or so other bills related to stem cell research (both embryonic and adult cells) could still be discussed, it is unlikely this will happen with the current time limitations. Meanwhile, the United Nations called this week for countries to decide what they will and won't do in terms of stem cell research. As far as I can tell from reading the news releases, the UN does not recommend or prohibit specific types of research, but suggests that countries of the world decide what is appropriate for their country before someone else in the world does that for them. Marie Godfrey, PhD
Genetizen's blog

Senate shies away from stem cell discussion

The media in the past couple of days are telling us that the U.S. Senate is probably not going to debate stem cells in this legislative session. This may also mean that bills for adult stem cells and umbilical cord stem cells will also wither and die. Senate Majority Leader Bill Frist (R-TN), who's busy with other more personal matters at the moment, would postpone voting until 2006 on a bill (HR 810/S 471) to expand federal funding of human embryonic stem cell research. The Stem Cell Research Enhancement Act of 2005--which has been approved by the House but has stalled in the Senate--would expand federal funding for human embryonic stem cell research. It also would allow funding for research using stem cells derived from embryos originally created for fertility treatments and willingly donated by patients Senate Judiciary Committee Chair Arlen Specter (R-PA), has threatened to attach the issue to some other spending measure, but might abandon his threat if Frist will set a specific date for 2006. Proponents of the embryonic stem cell bill would like a vote before the end of 2005; however, the calendar is booked with disaster relief, annual budget discussions, and confirmation hearings for the nomination of Harriet Miers to the U.S. Supreme Court. Marie Godfrey, PhD
Genetizen's blog

My opinion on stem cell research

Although I am extremely reluctant to do so, I've been encouraged by some others in Geneforum to share my personal opinion of stem cell research. I suspect they will be surprised. In the stem cell poll that appears in the left column of the home page for Geneforum, my vote is among those in the 3rd category--my opinion on federal funding of stem cell research is based mostly on economic grounds. Even before the two hurricanes that hit the Gulf Coast, I have been among those who feel that the U.S. federal government is spending our money inappropriately. There are so many other things we need to spend our money on--things that support life today. The opening of the World Stem Cell Hub in Korea has been of special interest to me because it means that another country, who deserves the economic boost, is focusing on research that is likely to provide amazing and unimagined applications in the future. We really need to operate as an international community, not just as one country. I agree with Insoo (see my interview with Insoo Hyun, a bioethicist) that the focuses of embryonic and adult stem cell research are different and that embryonic stem cell therapies for human diseases with a genetic component (for example, Type I diabetes) are a long way off in the future. There's no strong scientific reason to discard one type of research in favor of the other. I really don't know what I think about "true" embryonic stem cell research, where a human embryo, created by fertilization of an egg with a sperm, is destroyed. For somatic cell nuclear transfer (SCNT)--at least the type performed by Hwang in Korea--I tend to think the way Hwang does (according to Insoo). It's a very special form of tissue culture, providing an opportunity for advancing our knowledge of disease therapy and our understanding of cells in a way simply not possible with adult stem cells. As I read about the long-term effects of bone marrow transplant--especially for young children--I am excited to think that there may be a way to avoid graft-versus-host disease that is all too common when cells are transferred between two different people. Wouldn't it be great to have cells immunologically identical to the recipient? If SCNT is the only way to get that, then I support the research. I have wondered, as a scientist and geneticist, what if blastocysts created in SCNT are not capable of developing into human beings? Human fertilization and implantation are such complex processes--often failing even in the best of conditions. Why have we automatically believed that the product of joining a somatic cell and an enucleated egg cell is a viable human embryo? Just because animals can be cloned, it doesn't mean that's what's being done in SCNT. And no, I definitely do not support human cloning! Please note, these are my opinions only, and may not reflect those of other members of Geneforum or its board. Your opinions are also welcome; use the comment mode in this blog to let others know what you think--and why. Marie Godfrey, PhD
Genetizen's blog

U.S. reaction to World Stem Hub announcement

This morning the announcement of the new World Stem Cell Hub in Korea reached the U.S. Reactions have been very interesting. Scientists in San Francisco said they'd rather "do it themselves" and some newspaper descriptions suggested that the Korean approach is intended to by-pass ethics in the U.S. If you haven't already read my interview with Insoo Hyun, please select it from the home page and see what he thinks of the ethical approach. Insoo is Korean-American and provides a unique view of a person highly educated in both medicine and ethics and very aware of both American and Korean cultures and views. Look for his comments on women who donate eggs and on responses of the scientists to ethical concerns that rise as work proceeds. Marie Godfrey, PhD
Genetizen's blog

Another Korean innovation for stem cell work

Work at Dr. Hwang's laboratory in Korea is not limited to work with animals (preclinical work) or with cells in isolation or cultured (in vitro). There's also a major clinical (human)component, headed by Dr. Ahn, and an ethical component headed by Dr. Jung working in Korea and Dr. Hyun in the U.S. This three-part approach to stem cell collaboration is as innovative as some of the work itself and promises to set a interesting standard for research facilities around the world. While combining animal/in vitro work with clinical work is not unusual, adding in an ethical component is. See my interview with Dr. Insoo Hyun, which is accessible from the Geneforum home page, for today's news. Marie Godfrey, PhD
Genetizen's blog

Breaking news

Tomorrow, we are posting a very special interview with Dr. Insoo Hyun, the co-chair of the ethics advisory group of Hwang's World Stem Cell Bank (or Hub, depending on what they finally decide to call it). The interview tells about the innovative ways ethics, preclinical/in vitro science, and clinical studies are being integrated in Korea. Watch for it; I believe you'll find it well worth reading. Marie Godfrey, PhD
Genetizen's blog

8 + 1 = embryo + stem cell

The media today are all excited about the “fulfillment” of a suggestion made in the U.S. House in mid-August that stem cell lines could be started by removing a single cell from an 8-cell zygote. It was called a fig leaf at the time—a way to distract people from the techniques for creating embryonic stem cell lines that have been deemed immoral by many. The technique, known as preimplantation genetic diagnosis (PGD) has been used since the early 90s to identify human embryos that have genetic defects. Generally the embryos are from in vitro fertilization (IVF), but they could also be washed from the fallopian tubes before implantation. One or two blastomeres are removed from the developing embryo on Day 3, when it typically consists of 8 blastomeres (cells). The theory is that all 8 blastomeres are genetically identical. If two cells are taken for analysis, each can be checked for genetic makeup, for extra certainty. Many conditions, such as an extra chromosome 21—which will lead to Down Syndrome—can be checked with this procedure. In PGD, “unhealthy” embryos are discarded and one to four “healthy” embryos are introduced into the uterus in hopes that at least one will implant and develop into a healthy infant. The idea of using the extraction technique to establish a stem cell line obviously hasn’t been tested in humans, but today’s news reports mice pups and stem cell lines established using this technique. So, from 8 cells, you take 1; you put the blastocyst (7 remaining cells still clumped together) into a uterus and wait for the pups to emerge. You take the 1 cell and create a stem cell line. Obviously, the numbers are much greater than this. Five embryonic cell lines and 7 trophoblast stem cell lines (the trophoblast is the outer layer of cells of the blastocyst) were created. The baby mice appeared to be normal and healthy. Marie Godfrey, PhD
Genetizen's blog

Photos requested

The last questions in the stem cell survey included photos in the electronic version, which are not included in the version posted for our use. I have requested copies of the photos--which are of a week-old embryo, a younger embryo, and an older embryo. Meanwhile, here's the link to the full color survey report: http://www.dnapolicy.org/pdfs/StemCellSurveyReport.pdf You will need Adobe Reader to see it. If you don't have that program, you can get it free here. Marie Godfrey, PhD
Genetizen's blog