Sunday, July 30, 2006

A Few Words on Hype and Hope

A Few Words on Hype and Hope

Every so often a story about stem cell research comes out headlined “hype and hope.” One of the frequent criticisms of embryonic stem cell research is that it is offering false hope to patients who believe they will be cured by treatments that are actually not even in the pre-clinical stage yet. The “liberal media” is sometimes accused of distorting the facts. Etc.

We live in a country where people are susceptible to irrational beliefs of all sorts. People believe in crystals, horoscopes, angels, homeopathic medicines, expensive ionized water, shark cartilage, etc. They buy lottery tickets. They do apparently silly things out of love. They can be to the left or to the right—the spectrum of irrationality is often universal and unrelated to ideologies. It is not always a bad thing to be irrational—creativity and beauty can come out of this. And on the other hand some mentally ill people can be very rational within their own world-view, even if the world view seems crazy to everyone else.

As far as medical or health decisions go, people also are poorly educated about science, about logical and analytical thinking in general, about good decision making processes and ways to analyze credibility of sources. School are busy teaching to tests, jobs are demanding high productivity, entertainment is vacuous; there isn’t a lot of place in our culture for thoughtfulness. So it is hardly surprising that people who are very ill cling to whatever shred of possibility they can find, no matter how irrational it may be at the time. I have worked with the families of people who died from cancer, and every patient approaches illness—and treatment—differently.

Casting the stem cell debates in terms of how much hope is offered is a dead-end road. Scientists can’t be responsible for what people think, or don’t think; people need to take ownership of their own ideas. (There will always be a few people promoting snake oil, of course, but that’s not the overall way in which scientists present their research.) A much more useful way of framing or discussing the issue would be to consider the ways knowledge connects to power—whether individual, as in autonomy, or within a group—and the roles different knowledges take on in our culture(s). Instead of blaming researchers for giving false hope, or criticizing patients for not being critical enough of claims, let’s talk instead about ways to promote knowing. In all areas.

Update on Britain

Update on Britain

The U.S. news continues to be bouncing off the stem cell veto of over a week ago; opinions are flying everywhere. While it’s interesting to see the stem cell research receiving much more press than it has previously, so that a greater debate is perhaps emerging, it’s not where I want to put my energy in blogging. However, there are some headlines today that bring the UK into the picture—Tony Blair is splitting with Bush on this issue, and there are some other stories as well.

It was reported several days ago in a Reuters story on ABC that a British fertility clinic has received permission to begin recruiting egg donors for stem cell research from women who receive infertility treatments. In return, the women will receive some reimbursement for the cost of the treatment. It will be at least a year before this policy can go into operation. Yesterday the Washington Times reprinted a story from the London Daily Telegraph about using stem cells in treating bone fractures; doctors have used adults bone marrow stem cells from the patients to promote the healing of fractures that were not healing. So far they have progress in 5 out of the 10 patients.

Then, today it was reported in the Guardian that Tony Blair will use his current trip to America to back stem cell research. Blair is meeting in San Francisco with representatives of 10 biotech companies with the goal of encouraging collaboration and research between British and Californian scientists. A Reuters story in the Scotsman on the meeting reports that Blair is also trying to encourage investment in British pharmaceutical companies by saying they are winning the fight against animal rights activists. (A story in today’s San Francisco Chronicle covers the overall visit and issues that will be discussed in addition to stem cell research.)

While it might be more newsworthy if Blair was doing this in, oh, say, Kansas, I think it’s important for California researchers to feel some solidarity with someone else, even if it is a foreign government….