Wednesday, February 01, 2006

California Proposes Standards for Egg Donation

California Proposes Standards for Egg Donation

A committee working on the ethical standards for the CIRM yesterday proposed guidelines for egg donation. According to an article in the San Diego Union-Tribune, women who donate eggs could be reimbursed for their expenses, including lost wages. A distinction was drawn between compensation and reimbursement. The article says,
Perhaps the strongest section of the draft regulations involves informing potential donors about everything from the possible medical risks to how the stem cell lines might be used for undetermined future studies. Donors also will be told they will not receive financial benefits from any future commercial uses.

From my point of view, unless the donors are all well-educated, relatively well-off women, informed consent is going to be complex. Now maybe poor, poorly-educated women will have no interest in donating eggs; but these are also the women who are most likely to be looking for any extra sources of income. If “reimbursement” is not clearly stated, some people are going to interpret it as compensation. There may also be potential confusion with egg donation for fertility treatments.

It is an invasive procedure. If I donated an egg to science, I would appreciate some money for my time and trouble, sure. But I think it has to be a true donation to insure that informed consent really is obtained. (On the other hand, the research recipient of the egg should pay for the medical expenses involved—suppose you had to pay money for the needles and bags when you donate blood!)

UPDATE: Here's an important thought from a Feb 4 column in the New Scientist (subscription only):

Scientists like to talk about the sanctity of data, but human rights and welfare should be every bit as sacred. In publishing false data, Hwang betrayed the trust placed in him by his peers. But his cavalier disregard for the women he exploited, and for the patients whose hopes have been dashed, was far worse.

If stem cell research is ever to yield clinical benefits it will require willing volunteers, both to provide the cells to work with and to test experimental treatments. They need to know that their welfare is taken just as seriously as the veracity of a scientific paper.

UK Moves Forward in Stem Cell Research

UK Moves Forward in Stem Cell Research

Bloomberg has printed a lengthy article about researchers from the U.S. moving to Britain to do stem cell research because of the politics of it in the States. Tony Blair has an initiative to spend 100 million pounds ($177 million) to promote stem cell research. There are presently over 250 scientists in the UK working on embryonic stem cell research, there are 9 research labs, and a stem cell bank has been established. The article says, “British scientists say that by separating private beliefs from science, Blair has placed the U.K. in a position to benefit from innovation, making better use of the money U.K. taxpayers spend on health care. The government budgeted 90 billion pounds for medical services in the 2005-2006 fiscal year, 17 percent of total state spending.” The story does not tell news about research, but is useful reading for an account of the differences between countries.

Stem Cells Used in Treating Lupus

Stem Cells Used in Treating Lupus

In a widely reported story, doctors at Northwestern Memorial Hospital in Chicago have published results of a study in which patients with lupus were treated with stem cell transplants from their own bone marrow. The treatment involves radical chemotherapy to kill the existing immune cells in the patient’s body. Thirty-three of the forty-eight patients who received the treatment were still symptom free up to seven years later; disease-free survival for five years had a 50% probability. I had previously reported on the first round (published in 2000) in my post last month on autoimmune disorders. Some of the patients who were discussed in this study were treated as recently as 2003. The AP story is available in several places, including the Washington Post. Other sources have also reported on the study result. Reuters has a short version, Forbes has a longer version including comments from and a link to the Lupus Foundation of America, and the Los Angeles Times has a story as well.

Of note—all concerned have pointed out that this is highly invasive and potentially dangerous procedure that should be reserved only for patients who are severely ill with lupus and have a very poor quality of life. Also, while this treatment is effective for half the patients, it does not represent a cure; the transplant resets the body’s immune system, but the same problem could arise again later. Finally, although the AP story reports that 6 patients died from illnesses unrelated to the treatment, the LA times story says that doctors think one patient may have died from a fungal infection related to the transplant. If you have lupus and are thinking this is a cure, please read all the articles I’ve linked to and do other research as well.