Informed Consent: Cool PEG tube video edition

Here's a great Youtube video on PEG tube placement; it seems to be up as a marketing move by the company that made it. Is there any reason why patients and their families shouldn't always watch something like this in connection with informed consent for any procedure? BTW, I have no connection to Nucleus Medical Art, I just think it's a great video. Of course, it's not the whole of informed consent--someone contemplating PEG placement for a loved one with advanced dementia, for example, ought to be given data about whether PEG feeding actually increases lifespan. But videos like this are a great way to tell patients about procedures.

 

Presidential Commission Report on Genomic Privacy

The Presidential Commission for the Study of Bioethical Issues has released its report, "Privacy and Progress in Whole Genome Sequencing." The full text of the report, along with the accompanying press release, is available here. A Google-roundup of news coverage of the release is here.

I looked through the report last night, and am left with the general view that it's a necessary and useful prod to action. The report points out huge gaps in our legal preparedness for the $1000 genome. For example, federal law prohibits health insurers and employers from discriminating against insureds on the basis of genetic information, but life insurers and long-term care insurers aren't covered. Another: only about half of the states have laws in place prohibiting genetic sequencing of persons without their consent.

The report calls for states to adopt "robust" consent standards, though it is skeptical about the workability of rigorous re-consenting of subjects for new research done on their previously-obtained genetic information. It calls for uniform rules governing access to genetic data, and for policies requiring researchers to make clear to subjects whether and in what circumstances incidental findings will be disclosed to them. And it calls for strong standards not only of privacy-protection, but of data-security protection.

It's hard to blame the Commission for remaining at a fairly high level of generality in their recommendations. They were looking at genetic screening by public and private bodies, of persons and of tissue samples, for clinical and research purposes. When you have to talk about everything, it's hard to say much of anything. On the whole, the Commission is to be applauded for bringing policy-makers' attention to, and offering sensible discussions and analysis of, problems associated with genome sequencing for which we are legally unprepared.

More when I've had more time for reading!

Egg Donors and Stem Cell Research

This piece from the Atlantic (summarizing this article from Fertility and Sterility) says that most fertility clinics which accept donor eggs for fertility treatments, and which donate at least some "excess" embryos for research, fail to inform egg donors of the possibility that their eggs might be used in stem-cell research. Most of the surveyed clinics told donors that they would not have control over the future uses of their eggs or the embryos made from them, and 30% mentioned the possibility of research use, but very few mentioned stem-cell research by name. This ought to be remedied. I doubt that most women who are willing to donate eggs for fertility treatment have serious opposition to the use of their eggs in fertility research or in stem-cell research, but a few might. They should be given the information.

Argentina: Toward "Dignified Death"?

Argentina's Lower House has passed, by a wide margin, a "dignified death" bill. The bill, which is still to be debated in the Senate, would permit patients with irreversible conditions or terminal illness to make informed refusal of lifesaving or life-sustaining medical interventions, including nutrition and hydration. Incompetent patients' wishes could be expressed by a defined set of eligible proxy decision makers (family members and partners). The bill would also relieve medical professionals of liability for following patients' wishes.

Bioethics Hall of Fame, Henry K. Beecher Edition

My second nomination to the notional Bioethics Hall of Fame is Henry K. Beecher. Beecher, an distinguished anaesthesiologist, wrote a highly influential 1955 paper on the placebo effect; wrote a then-controversial 1966 paper which served as the single most important goad to regulation of research on human subjects; was one of the cast of all-star contributors to the American Academy of Arts and Sciences influential 1969 book, "Experimentation with Human Subjects" (Paul Freund, ed.); and chaired the Harvard Medical School ad hoc committee whose report supplied the first generally accepted criteria for brain death. Less well-known is Beecher's post-war work on LSD and mind-control, some of which was done on unconsenting subjects. Indeed, it may have been this military and CIA-sponsored work which led him, shortly thereafter, to embrace the necessity of informed consent.

Friday Frivolity, Informed Consent Issue