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.
Tuesday, October 16, 2012
Friday, October 12, 2012
Friday Frivolity: Altruism at the Deathbed Edition
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Note: Viewer discretion advised! This video contains strong language! Or at least, strong language being mouthed very clearly, though silently.
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!
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.
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.
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.
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