This is the title of a new paper by distinguished historian of eugenics, Paul Lombardo, available for download via SSRN here that recently appeared in the journal Ethics and Medicine. The paper focuses on Charles Davenport, who became the Director of the Cold Spring Harbor Laboratory in 1910 and immediate set up the Eugenics Records Office there later that year. It was to become a major institutional force in the development of North American eugenics. While the paper concerns a small episode in the history of eugenics from 1929, what it says about consent, medical intervention, and disability will ring bells for regular readers of this blog. The abstract of the paper reads: Continue reading
and not all five in one post, but each in its own, as I run 5 more posts from What sorts from roughly mid-2008 to early 2009.
Here are five What Sorts posts that I had particular fun writing–from mid-2008 to early 2009–that can serve as a kind of bon voyage for 2009 … despite the fact that only two of them were written in 2009, and pretty early on, at that. Farewell 2009, farewell! May 2010 bring more sunshine and fewer clouds.
In the November issue of the Journal of Medical Ethics, there’s a great paper on the Ashley case by Naomi Tan of Center for Social Ethics and Policy, University of Manchester and I. Brassington. It is titled “Agency, duties and the ‘Ashley Treatment.’”
Reading its full text, I find it reassuring that the authors, unlike some others who have written papers on the case, have obviously read pertaining documents very rigorously and have steadfast understanding of the facts. After describing the case and pointing out some ethical problems in the justifying rationale by Ashley’s father and the doctors, that are not very different from those already pointed out, the authors proceed to a philosophical discussion.
If we call creatures with autonomy and personhood “agent” for the sake of ease, and think that Ashley is a “non-agent,” would it justify the invasive treatments done to her? The authors give two different arguments to conclude that it wouldn’t. Continue reading
When Barb Farlow learned the baby she was carrying had Trisomy 13, her decision to continue the pregnancy “was immediate and innate, and in complete contrast to what I thought I might do,” says the Toronto mother and engineer. She was told the syndrome was lethal, but through online support groups met families whose children were living with Trisomy 13. “It was very important to us that she not suffer unnecessarily, but we wanted to consider any surgical treatments and make ‘best-interest’ decisions for her, like any parent.”
Barb’s daughter Annie (above) was born without the brain and heart defects common in Trisomy 13, but died at 80 days in 2005 after being rushed to a children’s hospital in respiratory distress. Following her death, Barb acquired Annie’s medical records and learned a “not for intubation” order had been written without consent. “This discovery was like the first domino in a long line of questionable events that left us unclear as to whether our daughter’s death was preventable.” Determined to change what she believes is systemic discrimination against treating children with certain genetic conditions, Barb shares Annie’s story at health-care conferences and ethics talks, with medical and law students, in medical journals and through her work with Patients for Patient Safety Canada.
To read the interview itself, which is informative about how Barb and Annie were treated within the medical establishment, including by medical staff at one of Canada’s leading hospitals for sick children, click here.
The gene is called TRAPPC9. Its mutations cause up to 50% of intellectual disabilities worldwide, says Dr. John B. Vincent of the Center of Addiction and Mental Health. The way his team identified the gene disturbs me. They studied genes of a large family from Pakistan that had at least seven members with non-syndromic intellectual disability and another from Iran. Because “researchers and families themselves have long suspected an inherited factor, based on patterns observed in extended families.” Dr. Vincent says, “This spotlights the intense interest that genetics is bringing to types of inherited intellectual disability that, to date, have been poorly understood.” He is talking about “devising potential therapeutic strategies,” too.
This all sounds so familier. The Kallikak family…..the Duke family……Buck V. Bell…….. So it’s coming back, after all?