Tuesday, October 16, 2012

The Lyric and the Narrative

If you are interested in medical humanities, please go read Cat Belling's lovely piece in BMJ Medical Humanties. She argues that medical humanities has been too closely equated with narrative, and that medical humanists would do well to attend to the non-narrative elements of literature, and to their value for understanding medicine.

Friday, October 12, 2012

Friday Frivolity: Altruism at the Deathbed Edition


Note: Viewer discretion advised! This video contains strong language! Or at least, strong language being mouthed very clearly, though silently.

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!

Science Humor, Chocolate-Faced Nobel Winners Edition

This article from New England Journal of Medicine conclusively proves, sorta, that countries that consume more chocolate per capita produce more Nobel Prize winners. Enjoy!

Shaking the Family Tree, Neanderthal Edition

The revelations from genetics about the past of our species continue to amaze me. This study from PLOS Genetics, for example, reveals evidence that supports the hypothesis that the subset of humans who left Africa may have continued to mate with Neanderthals until as recently as 47,000 years ago. There's more detail about related studies in this article from Science News--including mention of the fact that Neanderthal DNA is even more prevalent in Asian and South American populations than in European.

Monday, October 8, 2012

Massachusetts and Physician-Assisted Suicide

Having recently emerged from a multi-month blogging hiatus, I feel guilty for not having addressed the pending Massachusetts physician-assisted suicide initiative.

This November, Massachusetts citizens will vote on an initiative to establish an Oregon-like regime of physician assisted suicide. The full text of the initiative is here; the Oregon Death With Dignity Act, on which the Massachusetts initiative is very closely modeled, is here. The proposed law would permit competent, terminally ill patients to receive from their physicians a prescribed lethal dose of medicine with which to end their own lives.

I was against physician-assisted suicide (PAS) before I was for it. I feared that PAS would be offered to poor people, poorly-educated people, and minorities, in lieu of more difficult- and expensive-to-provide high-quality end-of-life care. Others (not I) worried about a slippery slope from assisted suicide (where the patient kills herself) to euthanasia (where the doctor gives, for example, an injection to a patient who wants it), and thence to involuntary euthanasia (where a doctor gives an injection to a patient who doesn't want it, or whose desire to die is not well-documented). Others worried that the availability of PAS would undermine incentives to improve end-of-life care and palliative medicine. And still others (again not I) worried about an assisted-suicide regime giving rise to a "duty to die;" that is, a sense among elders that they really ought to commit suicide rather than inconvenience their children, or cost them too much money.

What I feared would happen has not happened. If you look at Oregon's annual reports about who uses their assisted suicide program, what you find is that most are white, well-educated urban dwellers, already in home hospice care. Minorities are barely involved with the program, let alone being disproportionately its "victims." As I say to my students, it appears that assisted suicide is for control-freaks. No case of euthanasia, voluntary or involuntary, has been established in either Oregon or Washington, so that slope seems not to be so slippery. And Oregonian hospice care and palliative care has not suffered after the introduction of PAS; indeed, it has prospered. It remains a vexed question, though, whether end-of-life care in Oregon is good because of pressure exerted by the existence of the assisted suicide option, or whether, alternatively, assisted suicide performs well in Oregon because its end-of-life care is so unusually good; or, indeed, or whether both things are true.

Have we slipped down the slope toward a duty to die? I see no evidence.

My own position on physician-assisted suicide is completely open to revision in light of empirical data. Can someone show that people who don't want to die are being pushed into assisted suicide? I'll count that as important evidence against PAS. Can someone show that PAS programs enhance the quality of end-of-life care? That'll count in its favor. Can someone show that medicine is completely able--not just in ideal circumstances, but on the ground in real clinical settings--to control the suffering of patients at the end of life? Then I'd drop my support for physician-assisted suicide altogether.

One thing I won't do, though, is stop calling Physician Assisted Suicide by that name. Many who lobby in favor of PAS want to jettison the negative associations of the word "suicide," and point out that we are, at least for the moment, talking about people who are dying anyway, and who would, in many cases, prefer not to. The word "suicide," they argue, doesn't fit the cases they're talking about. But to my perhaps-overly-legal mind, the word "suicide" simply applies to people who are killing themselves, even if they're killing themselves because they're dying. Other phrases (Aid in Dying, for example) are inexact, in that they cover not only PAS but also voluntary active euthanasia. Words mean what they mean, usually; the battle, in my view, should not be about claiming that the terminally ill aren't really committing suicide, but rather about the deeper point that some suicides are morally, even religiously, permissible. Think about the harm of death: the suffering attending the dying process, the loss of integrity and control, the loss of a future you'd like to live to experience. The person who rationally elects PAS avoids the suffering, maintains and even establishes integrity and control, and has no desirable future to lose.

If I were a Massachusetts resident, I'd vote in favor of the initiative.

Saturday, October 6, 2012

The Presidential Candidates on Bioethics

Thank you, Hastings Center, for putting up this very valuable site, highlighting the two candidates' and their parties' positions on various bioethics issues.

Canada and the Crime of HIV Exposure

The Supreme Court of Canada has just issued two rulings, one on an appeal from Quebec and the other on an appeal from Manitoba, which together clarify and restructure the circumstances under which criminal sanctions can be applied to an HIV+ person who has sex without disclosing that HIV status to his or her sexual partner.

Since 1998, Canadian law has held that those who fail to disclose their HIV status can be charged with sexual assault or aggravated sexual assault if their sexual relations pose "a significant risk of bodily harm" to their partners. Lower court holdings over the years have held that there was no significant risk of bodily harm where the accused used a condom, or where the accused had a low viral load due to medication. The new Supreme Court holdings agree that there is no significant risk, and no legal duty to disclose HIV status, where the accused's viral load is low due to medication, and a condom is used. But the Supreme Court upheld the convictions of defendants who did not use condoms, even if their viral loads were low.

The decisions have drawn immediate criticism from opposite sides. Advocates for persons with HIV/AIDS accuse the court of reinforcing irrational and unscientific fears of HIV transmission, of stigmatizing those who are infected, and of creating a world in which even responsible condom use offers no surefire protection from prosecution for those who do not disclose their HIV status. The threat of criminal prosecution for an act of consensual sex, they argue, doesn't protect people from HIV transmission. Conservative critics of the opinions lament the Court's having given legal permission for people not to disclose their HIV+ status to their sexual partners in some circumstances.

The Court also said that the "significant risk" necessary to underwrite criminal prosecution would vary with the sex-act in question, and could also change with medical progress.

Mouse Eggs from Stem and iPS Cells

Okay, this is a big deal. A research team from Kyoto University has successfully used both murine stem cells and murine induced pluripotent stem cells to generate functioning oocytes. For those of you who do not excel in Latin, that means they took mouse embryonic stem cells and some ordinary mouse cells, and developed each into eggs. Those eggs were then used to create healthy mouse offspring.

This team and others have created both sperm and eggs from stem cells before, but haven't been able to produce healthy offspring from them. This time the researchers used proteins and other factors to induce the stem cells and iPS cells into becoming "primordial germ cell-like cells," or PGCLCs. The PGCLCs were then combined with cells from mouse ovaries to make artificial ovaries. These were then transplanted into female mice. After a month, the mice were found to be carrying immature eggs. The eggs were matured in vitro and then fertilized; the resultant embryos were transferred into female mice, who then gave birth. The happy mothers later became grandmothers, without need for further laboratory intervention.

Making oocytes out of stem cells would be impressive enough, but making them out of iPS cells is huge. This lab took an ordinary cell from a mouse, tweaked it and coaxed it into becoming an oocyte, and then made a baby mouse out of it. We're that much closer to being able to do that same trick for humans.

So, any tissue sample from any person, dead or alive, could in theory be used to make that person's baby. Did I say this was a big deal? Obviously it opens up some amazing possibilities for infertility treatment; but obviously, also, it poses huge challenges for control over the future uses of tissue in research and in the clinic.

Friday, October 5, 2012

Bioethics-y Things at Yale

Our Technology and Ethics group will be hosting Danah Boyd, Senior Researcher at Microsoft Research, on Wednesday, October 10 at 4:15 PM at 77 Prospect St. (ISPS), room A002. Ms. Boyd will speak about "Privacy and Ethics in Big Data Research."

There are several great Yale-based exhibits on bioethics issues right now. The Sterling Memorial Library has a show called "The Fortunoff Video Archive for Holocaust Testimonies: Achievements and Challenges 1982-2012." The Cushing/Whitney Medical Library has its display, "Medicine at Work: A Selection of Instruments and Materials from the Medical Historical Library;" you can glimpse the collection here. The Yale Peabody Museum has an exhibit called "Big Food: Health, Culture and Evolution of Eating."

And then there's Ain't Gonna Make It: A Rockabilly Exploration of Death at the Yale Cabaret.


Friday Frivolity, Administrative Waste Edition

They Blinded Me With Science, Climate Change Edition

One day a group of friends were talking about climate change in the cafeteria. Ralph said, “There is growing concern and evidence that scientific data, from which global warming theories emerged, has been manipulated, enhanced or deleted.” Larry nodded and responded, “The data does not support the premise that carbon dioxide emissions are playing a significant role in the world temperature variations. The temperature of the Earth has been changing over centuries with warmer and colder periods throughout history.” Dana agreed, saying,“I do not believe that CO2 is a cause of global warming.”

Chip was more emphatic. “One word,” he said, “Bunk. It's built off of corrupt data and a corrupt NASA program. It's bunk. It's fallacy. There is absolutely no substantial evidence to prove that there is global warming.” And Dan agreed: “I think it’s all baloney. It’s all baloney. I think it’s just some scheme….I just don’t believe it, I just don’t believe it. You know, I’m a scientist, I’m a surgeon, I’ve done scientific research papers, there’s a lot of skepticism.”

From his seat at the next table, Chuck muttered, “I think we ought to take Al Gore, put him on an iceberg, and put him way out there.”

Randy took a sip of his drink, and started to wax philosophical. “The greatest impact on our climate clearly is the sun,” he said, “and we have very little impact on the sun and how much energy and temperature the sun is sending to the earth. We have seen clearly over thousands of years that at different times more energy has come through and different times less energy has come through, and that variation has impacted climate change. Over the thousands of years that’s been recorded we’ve had both colder times and warmer times. It happens to be that we’ve recently come out of a warmer time and now actually we’re headed in to a little bit of a colder time. The impact of the sun is much different than impact that we could have had.” Ben nodded and offered his terse agreement, saying, “Our planet has warmed and cooled from the beginning of time.”

Paul spoke up: “Scientists all over this world say that the idea of human induced global climate change is one of the greatest hoaxes perpetrated out of the scientific community. It is a hoax. There is no scientific consensus.” And he had a lot more to say about science: “All that stuff I was taught about evolution and embryology and the Big Bang Theory, all that is lies straight from the pit of Hell. And it’s lies to try to keep me and all the folks who were taught that from understanding that they need a savior…You see, there are a lot of scientific data that I’ve found out as a scientist that actually show that this is really a young Earth. I don’t believe that the Earth’s but about 9,000 years old. I believe it was created in six days as we know them. That’s what the Bible says.”

Jim shifted the conversation back. “I think that the science is inconclusive on this,” he said. “What the science says is that temperatures peaked out globally in 1998. So we’ve gone for 10 plus years where the temperatures have gone down….I personally believe that the solar flares are more responsible for climatic cycles than anything that human beings do and our lunar, our rovers on Mars have indicated that there has been a slight warming in the atmosphere of Mars and that certainly was not caused by the internal combustion engine.”

Sandy wanted to know, “Does the so-called danger posed to the economy by not acting to reduce what some may call man-made effects on climate change outweigh the economic costs to the country?”

Finally Todd concluded for the group, saying, “This whole thing strikes me if it weren’t so serious as being a comedy you know. I mean, we just went from winter to spring. In Missouri when we go from winter to spring, that’s a good climate change. I don’t want to stop that climate change you know. Who in the world want to put politicians in charge of the weather anyways? What a dumb idea….Some of the models said that we’re going to have surf at the front steps of the Capitol pretty soon. I was really looking forward to that.…”

Then the whole gang got up to attend their next meeting of the US House of Representatives Committee on Science, Space and Technology.

Tuesday, October 2, 2012

Three Genetic Parents?

The UK's Human Fertilization and Embryology Authority is conducting a public consultation on the question of whether they ought to permit the creation of children with three genetic parents. The question is about a new assisted reproductive technology that could prevent children from suffering from diseases carried in mitochondrial DNA. In essence, the fertility clinic would fertilize an egg, and then remove the genetic material from that egg and pop it into a de-nucleated egg from a donor. The result would be an embryo with Mom and Dad's nuclear DNA, but with mitochondrial DNA from Donor--free from any mitochondrial diseases of which Mom is a carrier.

I'm not actually bothered by this. While having three genetic parents is something new, surrogacy has given us many children with three biological parents (egg Mom, sperm Dad, and surrogate Mom--who, make no mistake, makes some serious contributions to the basic makeup and future health of the child, via hormonal and epigenetic influences, diet, gestational environment, and so on). And after all, what will we call the child of this high-tech intervention, with her three different pro-genitors?


Food Stamps and Sugary Drinks

Back in 2010, New York's Mayor Bloomberg (he of the new big-soda ban) and then-Governor Paterson proposed limiting the ability of food-stamp recipients to spend their aid-money on sugary sodas. They hoped to show that limiting spending on sugary drinks would reduce obesity. This was viewed as paternalistic intervention into the lives of the poor, and the federal government blocked the proposal. Now colleagues at Yale's Rudd Center for Food Policy and Obesity have demonstrated that "[d]espite all the evidence on health risks linked to their consumption, sugar-sweetened beverages account for almost 60% of beverage purchases among SNAP [Supplemental Nutritional Assistance Program] households and about one half of beverages purchased by WIC-only [Supplemental Nutrition Program for Women, Infants and Children] households." In all, around $2 billion dollars of SNAP money is spent annually on refreshment beverages "with no nutritional value." Perhaps it's time to put additional limits--not all-out bans, but limits--on the freedom of nutrition-subsidy recipients to spend their aid dollars on sugar-water.