More on genetic medicine

The third and final installment from The Code, a series of 3 short documentaries on the internet about the origins of genetic medicine, is entitled “Selling the Code.”  This is about genetic testing to try to predict risks of diseases, among other things.  Doctors use some of this testing in clinical care and a burgeoning amount of research.  A number of companies, such as 23andMe, will, for a (not-too-high) price, sequence your genes, or at least some of them, from a cheek swab sample you send, and then give you a report of what the results are and what they might mean.  In cases where there is a simple connection between a genetic abnormality and a disease—if you have the gene, you get the disease—the approach can be very helpful.  But it’s rarely simple.  Even for known cancer-propensity genes like BRCA1 and BRCA2, there are many variants, and what they mean clinically is far from fully known.  In fact, for most of the common disease we care about, like heart disease, diabetes, and most cancers, the story is complicated indeed.  So what to do with the information is often far from obvious, and careful genetic counseling by a physician who specializes in genetic medicine is a must.

23andMe ran afoul of FDA a couple of years ago, leading to a long process that resulted in FDA acceptance of a more limited menu of testing by the company.

And some companies will sell you “genetic information” for more trivial concerns—presuming to tell you something meaningful about what fitness regimen you should pursue, or what wine you’ll like.  Caveat emptor, I suppose, although the risks are low for some of this.

AND—companies like 23andMe keep anonymized data bases of the genetic information they get for and from their customers, and sell that information to drug companies to support the latters’ research.  An individual can’t be identified in the process (at least, not readily, see my January 2013 post about “DNA research and (non)anonymity”) but the data in the aggregate is valuable to the genetic sequencing company.

These kinds of concerns—particularly what to do with an individual’s information, but also the usefulness of having genetic data on a large group of people to understand disease and help discover new treatments—are germane to an ongoing project of the Hastings Center to assess the implications of genetic testing of the whole genomes of large numbers of babies, to screen for any of several dozen genetic diseases.   Again, most of the babies will be perfectly healthy, and the yield from screening for rare conditions is low.  But people arguably have a right to know about themselves, and parents to know about their newborns.  Yet still, to what end will we use information that we don’t fully understand?  Read a good Los Angeles Times article, that overlaps some of the points in The Code’s video, and provides other useful information in quick-and-easy form, here.

Finally, I was gratified to read that a project to synthesize an entire human genome in the laboratory is being scaled back, at least for now.  Apparently, they can’t raise enough money.  I bet would-be investors aren’t convinced they could own the results and guarantee a return on their money.  I fretted about this in May of 2016 and again in July of the same year.  I encourage readers to click through and read those, as well as the concerns raised by Drew Endy of Stanford and Laurie Zoloth of Northwestern, who criticized both the effort in concept and the closed-door, invitation-only meeting at Harvard to plan it.

That was two full years ago.  A lot is going on under our noses.

Raiding the CRISPR

The second installment from The Code, a series of 3 short documentaries on the internet about the origins of genetic medicine, addresses gene editing.  The current approach to this exploits “CRISPR,” or “Clustered Regularly Interspersed Short Palindromic Repeats,” DNA sequences initially discovered as a sort of bacterial immune system but very efficient at editing out undesirable genetic features, such as disease susceptibility mutations in plants or, for that matter, people.

For medicine, the CRISPR approach is one of the latest ways of approaching gene therapy.  For example, sickle cell anemia is caused by a single misplaced “letter” in the 3-billion-letter human genetic code.  (It’s actually 6 billion because there are two copies of each gene, only one of which is “read” to produce what the gene codes for.)  It’s a blood disease, one in which the red blood cells are defective, and to treat it definitively requires replacing an affected person’s blood cells with good, normal ones.  Sickle cell is inherited, and it shows up in kids, and, trust me, if you’ve ever taken care of someone with it, as I did 30-some-odd years ago in my medical training, you’d welcome a world in which people didn’t have to suffer from this.

The problem: where to get the good cells.  Answer: from a suitable donor, or perhaps by taking out some of the sick person’s bone marrow cells, editing the abnormal hemoglobin gene with genetic “scissors,” and infusing them back into the person’s vein, to take up residence in the bone marrow and flourish, normally, replacing the sick cells.  CRISPR is the genetic “scissors.”  The approach is still experimental, but promising.

Technical and safety concern: how can we be sure the scissors don’t go “snicker-snak,” as my old genetics professor used to say, in the wrong places, and change other genes?  They appear to be pretty accurate so far, but just how sure are we?

Bigger ethical concern: might we—should we—edit a human embryo—say, one diagnosed after IVF but before implantation—to nip the genetic disease in the bud, with the prospect of preventing future generations from getting the abnormal gene, and hence the disease, at all?

Hmmm…to cure—perchance to control?—that’s the rub.  Where would be draw the line?  Could we?  Why would we?  Why not try to edit as many diseases out of existence—and as many desirable traits into existence or predominance—as we could, technically?  Well, apart from the small problem that the genetic bases of most diseases are more complex than we yet understand (see last week’s video release from The Code), or the other small problem that editing multiple genes at once is, as of now, still a future prospect for genetic engineering and the field known as “synthetic biology,” is the concern that people making the decisions about what to edit become, as it were, the “actors,” or “conditioners,” to borrow C.S. Lewis’ term from The Abolition of Man, while those acted upon, and their progeny, are subjects—perhaps (unavoidably) unknowingly.  If this is in the context of doctor/patient relationships and specific diseases and informed consent (to the degree that is possible), and the like, that may be fine, but broader use raises concerns that should be obvious.

CRISPR-based gene editing is the most recent approach to gene therapy.  The bulk of the video is about other approaches.  It reviews past history, including efforts not to edit genes, but add good genes to replace missing or bad function of bad genes.  It also reviews the history of people dying from gene therapy research that was, in retrospect, charging ahead perhaps faster than it should have been.  And it mentions recent successes.  Still relatively scattered, but promising, and, if pursued under proper human subject research ethics, generally ethical.  It’s the prospect of heritable editing that gets worrisome.  And we should remember that, even for the ethical stuff, we humans can envision medical advances faster than we can make them reality.

These videos are good viewing for the general public.  Check them out.

New short videos on genetic topics

This week, an email from the Hastings Center promoted The Code, a series of 3 short documentaries on the internet about the origins of genetic medicine.  The three are being released one week at a time.  The first, released this week, briefly (12 minutes) reviews the determination, or sequencing, of the entire human genome, a project conducted in the 1990’s, and completed in 2000, by two labs—one in the government, one private—that initially worked in competition but ended working in collaboration.

It’s a nice review of the key points:

  • A person’s entire genome can be read fast—in a few hours—by an automatic process, at an ever-decreasing cost that now is on the order of $1000.
  • We still are FAR from understanding what the genetic code means for human disease. The number of cases in which there is a reasonably direct link between a single, or a small number, of genetic abnormalities and a gene, in a way that allows us to predict risk of disease or be able to make an enlightened selection of treatment, is still small.
  • With more reading of peoples’ genomes, and more computing power, what amounts to a massive pattern-recognition problem will likely yield more solutions that can be practically exploited to the benefit of human health. Some entities are collecting more peoples’ genomes in a database, for ongoing analysis and, at first, hypothesis generation—that is, “maybe this is a lead that could be acted on for benefit, after the proper follow-on research.”
  • But for now, we should not get carried away—”personalized medicine” is not generally “ready for prime time,” but useful only in a few specific situations, and often most appropriately the subject of new medical research. And one should be careful to get well-informed advice from a medical professional who is expert in genetic medicine, and not over-interpret what a commercial entity might be advising.  (But that, about which this blog has commented in the past, is for another time and another posting.)

This first video does not get into ethical issues—e.g., of justice, privacy, and the like.  But it is a good, quick, engaging overview suitable for the general public.  (BTW, I hate calling non-scientists and non-physicians “lay people,” a term I think best reserved to distinguish most of us from the clergy, and the abuse of which just reinforces the notion of medical scientists as a sort of “priesthood.”)

The second video in the series, due out next week, is on gene editing, and the third, the week after, will address companies that are willing to sequence your genes and tell you, for a price, what they think it might all mean.

Toward true public engagement about gene editing

The March 22, 2018 edition of Nature includes two thoughtful, helpful commentaries about improving the public dialogue around “bleeding edge” biotechnologies.  In this case, the example is gene editing, of which one commentator, Simon Burall from the U.K., says, “Like artificial intelligence, gene editing could radically alter almost every domain of life.”  Burall’s piece, “Don’t wait for an outcry about gene editing,” can be found here.  The other commentary, “A global observatory for gene editing,” by Harvard’s Sheila Jasanoff and J. Benjamin Hurlbut from Arizona State, can be found here, and an umbrella editorial from the editors of Nature is here.  All are open-access and all are worth reading by any citizen who would like to be informed at even a general level about the ethical discussions of biotechnology.

The three share this tone: more inclusiveness, more humility on the part of scientists, and willingness to have difficult conversations are called for—and have been generally lacking in past efforts to engage the public in discussion of the implications of new biotechnologies.  In the view of Jasanoff and Hurlbut, even the much-admired 1975 Asilomar conference that established boundaries on recombinant DNA research and its applications, was too narrow, focusing on technically-definable risks and benefits but not taking time to reflect more deeply on the ultimate ramifications of what the scientists were doing.  The experts dominate, and lecture—gently, but clearly—the “laity.”  This can create a sort of foregone-conclusion effect: getting people comfortable with the research agenda and the scientists’ and technologists’ (including industry players’) goals is the true point.  The possibility that some work simply should not be pursued for a while may scarcely be expressed, much less heeded.  As Hans Jonas said in a reflection about Asilomar, “Scientific inquiry demands untrammeled freedom for itself.”

Burall, Jasanoff, and Hurlbut seem to be saying, repent from that, as it were.  Don’t just have a panel of a dozen scientists or so meet for a single seminar or webinar with a dozen or so non-scientists (with, I might add, the token clergyperson).  Create a clearinghouse for a wide range of views on what gene editing really might mean, and how humans should respond.  Open the dialogue to a large number, not just a few, non-scientists from a wide range of perspectives.  Pay attention to cultures other than the developed West—especially the global South.  Perhaps start with seminars that are cooperatively organized by several groups representing different interests or stakeholders, but don’t stop there—create a platform for many, many people to weigh in.  And so on.

They don’t suggest it will be easy.  And we do have a sort of clearinghouse already—I call it the Internet.  And we’d want to be sure—contra John Rawls—that viewpoints (yes, I’m thinking of God-centered perspectives) are not disqualified from the outset as violating the terms of the discussion.  And, perhaps most importantly, what threshold of public awareness/understanding/agreement would be insisted upon to ground public policy?  Surely a simple popular majority would be suspect, but unanimity—achievable in smaller groups, with difficulty—would be impossible.  And concerns about “fake news” or populist tendencies run amok (the “angry villagers”) would be unavoidable.

But, as Jasanoff and Hurlbut say, “In current bioethical debates, there is a tendency to fall back on the framings that those at the frontiers of research find most straightforward and digestible…[debate must not be limited by] the premise that, until the technical capability does exist, it is not necessary to address difficult questions about whether [some] interventions are desirable…Profound and long-standing traditions of moral reflection risk being excluded when they do not conform to Western ideas of academic bioethics.”

Bingo and amen.  How to make it happen, I am not sure.  Jasanoff and Hurlbut say they are trying to get beyond binary arguments about the permissibility or impermissibility of germline genome editing, for example.  Still, I don’t see how the “cosmopolitan” public reflection they advocate can go on without agreeing on something like a fairly firm moratorium—a provisional “presumption to forebear,” as I like to put it—while the conversation proceeds.  And hey, we’re the Anglosphere.  We’re dynamic, innovative, progressive, pragmatic, visionary.  We don’t do moratoria.   Moratoria are for those Continental European fraidy-cats.  Then again, these writers are seeking a truly global discussion.  And past agreement by assembled nation-states appears to have at least slowed down things like chemical and biological munitions (recent events in Syria notwithstanding).

These authors are doing us a service with their reflections.  Read their articles, give them a careful hearing—and note that their email addresses are provided at the end.  Maybe I’ll write to them.

Resources regarding ethics of gene editing

Recently, two resources have become available regarding gene editing and the issues raised by it.

First, the National Academies of Science, Engineering, and Medicine have made available an archive of its February 22 webinar about human gene editing.  The home page for the Academies’ human gene-editing initiative is here.  A link to the archived webinar is here.  The slides can also just be viewed here.

Second, Issue 1 of Volume 24 of the journal The New Bioethics is dedicated to human gene editing.  The entire issue, or individual articles from it, are available online for purchase, or for viewing if you have access through an academic institution.  Article titles deal with, for example, differentiating gene editing from mitochondrial transfer, comparing ethical issues with gene editing vs embryo selection, and “selecting versus modifying” to deal with disabilities.

I have not been through these materials in any detail, yet.  The webinar looks a smidge promotional, co-sponsored as it was by the Biotechnology Industry Organization (BIO).  But it also recommends the Academies’ report on the status of human gene editing, and summarizes key recommendations, which include limiting efforts (at least for the present!) to editing “somatic,” or, if you will, “adult” cells to make them into cellular therapies for recognized diseases.  This is well within the existing ethical and regulatory regime governing clinical research and treatment development, as opposed to the deeply problematic prospect of heritable gene editing, or attempts to edit genes for human enhancement, both of which the report and the webinar (at least the slides) counsel that we NOT rush into.  The New Bioethics articles look thoughtful and worth reviewing, which I hope to do (and comment on) in the near future.

Doctor-assisted death: resisting the slippery slope

The New England Journal of Medicine has two new “op-ed”-style pieces raising concerns about extending physician-assisted suicide (PAS) from people with end-stage terminal illness to people who may express a desire to die because of (non-terminal) mental illness.  (Regrettably, both require subscription access.)  PAS in these cases is being exercised in Belgium and the Netherlands, and is being considered in Canada

In one article, the authors label PAS for psychiatric patients “misguided public policy,”   Although patients may be suffering terribly from, say, severe depression, they may be victims of “distorted cognition” that leads them to see their lives as worthless.  This, the authors argue, is a manifestation of the mental disease—so, in a sense, it’s not “healthy” or “real” (my words, not theirs).  In essence, the patient is not somehow mistaken about his suffering—rather, it’s potentially treatable.  Unless in some cases it’s not, I suppose, in which case it’s not clear how the authors would resolve that.  Oh, and in the absence of universal health insurance (a problem that the Dutch and Belgians and Canadians all avoid, they allow), some miser might see PAS as a convenient way to save a few bucks—or quite a few, for that matter.

Some suicidal psychiatric patients may indeed make “rational and autonomous” (the authors’ phrase, not mine) decisions for PAS, but doctors might make diagnostic mistakes and “let other patients slip through.”  Must such mistakes be accepted, as a sort of “collateral damage” for an otherwise desirable policy?  No, the authors say; to allow PAS for psychiatric patients contradicts “physicians’ commitment to preserving life and preventing suicide.”  To this last point, I might offer an “Amen.”

In the other article, a Dutch doctor argues that there, and in Belgium, the PAS regime is simply too lax.  For PAS to be ethical, he argues, it must be a last resort.  But no such safeguards are in place there, and, indeed, eligibility for one form of treatment—deep brain stimulation—requires a more stringent evaluation than PAS does.  The author of this article would permit PAS for psychiatric patients not only if all treatment options had been considered, but “only if the patient had not refused a reasonable treatment option” (emphasis mine).

So much for autonomy, I guess.  Back to a (welcome?) paternalism that recognizes the doctor’s calling is first to care for and preserve life?

The second author concludes that PAS should be considered only in parallel with “recovery-oriented care,” to ensure “that there is a treatment advocate involved, [that PAS is not] used as an escape for an overwhelmed physician, and [that] the focus of care [is not] narrowed down to death.”

Um….yipes?

Reviewing the ethics of paying human research subjects

Sometimes it is both necessary and proper to pay a person to participate in a clinical trial, of a drug or some other medical intervention, or a data-collection study, or something else that involves people.  An article in this week’s New England Journal of Medicine reviews many of the relevant ethical issues.

A link to the article is here.  Correction to initial post:  subscription or purchase does appear required.

Why pay somebody to be in a trial?  The main reasons are to reimburse them for unavoidable expenses, to compensate them for time that would not otherwise be required in the course of standard medical care or normal life, and, indeed, to get them to participate in the first place.  In cancer medicine, where I’ve worked, the subjects are cancer patients who are generally not paid to participate; they usually are willing to do so in the hope of possible benefit, plus, often, a sense of altruism.  But most drugs have their first human testing in healthy volunteers, to begin to identify potential safety concerns and understand how, and how rapidly, the drug is eliminated from the body.  In those cases, the research subjects are almost always paid, sometimes substantially.

Such payments are not necessarily unethical, as long as they are not too big.  If they are, then they could create an undue influence to participate.  That would upset the balance of benefits and risks and compromise true informed consent.  By well-accepted ethical standards for research on human subjects—many of which are codified in regulation—the risks to human subjects must not be excessive, must be avoided or mitigated to the extent reasonably possible and commensurate with the goals of the research, and must not exceed the foreseeable benefits of the research, either to the individual subject or to society overall (e.g., in the form of important medical knowledge), or both.

Payment to a subject is not considered a benefit in and of itself, but should be “neutral” to the benefit/risk assessment.

There’s no hard and fast rule about paying subjects—no single standard “fee schedule,” so to speak.  Rather, each ethics board reviewing a study must also review and approve the amount and timing of payments to subjects.  Again, such payments should be high enough to respect the subject’s contribution to the research, but not too high so as to give them incentive to participate when maybe they should not.  Also, it’s a general principle that payment should be in installments; generally, no more than 10-15% of the total should be held back to the very end of the study.  Why this last point?  Because it’s also a principle that subjects can opt out of a study at any time, but if they think “I have to stay in to the bitter end to get paid,” that could pressure them too much.

Note, BTW, that such pressure is not the same as coercion, which by definition involves a threat, and does not apply to this payment question.

Also, payments must be appropriate so that subjects don’t get a wrong idea about the potential value or efficacy of an experimental drug, or that they might be induced to try to be in more than one study at once.  You might be surprised how significant that last risk is.  In my past IRB work, we just to worry about “professional subjects” who make some level of living by going from one research study to another.  More than one at once means getting two or more drugs at once that probably ought not to be combined, willy-nilly.

And of course, the potential for economic exploitation of low-income individuals must also be considered and respected.

The NEJM article really doesn’t break new ground but is a helpful review for those interested in essential research ethics.  The FDA has also provided guidance, which can be reviewed here.

Fertility with frozen eggs: not a sure thing

In case you didn’t see it, the Washington Post has this story about how more women are trying to improve their overall chances of having a baby—particularly in the later reproductive years of their 30’s and 40’s—but success is far from certain.  Human oocytes (eggs) are fragile things, and it was not until recent years that freezing techniques developed to a point that would allow the eggs to survive being frozen and, some time later, thawed (the “freeze-thaw” cycle).  Then, they would be fertilized in the lab, by in vitro fertilization, and implanted into the womb of the would-be mother.

As the article points out, women are born with their entire endowment of eggs, which become less likely to be successfully fertilized and develop into a healthy baby as they, and the woman, age.  Hence a woman’s inexorably declining fertility, particularly from their mid-30’s on.  Freezing eggs for later use is increasingly popular, if one can afford it, or if employers offer it as a perk, as some do, to their female employees.

It’s still expensive, and success appears to depend on the age of the woman (and eggs) at their harvest, and the number harvested and kept in frozen storage.  One must use the qualifier “appears,” because, as the article also points out, reliable statistics are not being kept.  The not-so-subtle implication is that the fertility “industry” wants to sell the process but would rather not know that the ultimate success rate could be as low as, or lower than, the 50-60% rate quoted by New York University.

Clear implications: better data and more transparency are to be desired, and there appear to be at least some remaining biologic limits, strong if not absolute, to reproductive freedom.  Beyond that, as I opined in May of 2013 (fairly bluntly, I do confess) are the radical implications for our concepts of parenthood and begetting children, and for turning said procreation into just plain old, quality-controlled, fully artificial creation.  Things haven’t gotten quite so absolute, yet.  But better quality control of egg freezing and the outcomes, if possible, would be a move in the direction of more artificial reproduction.

It’s a good article from the Post.  Too much to try to do justice to here.  Read the whole thing.

Update on clinical studies of human gene editing

The January 22 edition of The Wall Street Journal carried an article the essential message of which was, “the Chinese are ahead of us in gene editing.”  Specifically, more human clinical trials are active in China than in the US using gene editing in some form to treat people with specific diseases.  Some of these trials use the “hot, new” CRISPR-Cas9 approach to gene editing.  Almost all of the active ones are in China, although one has recently been approved by regulators to begin in the U.S., at the University of Pennsylvania.  That one appears not yet to be recruiting patients.  In most of these “CRISPR” trials, cells are removed from a patient’s body, altered in the laboratory to make them more likely to treat the disease in question (in this case read: attack a cancer), and injected back into the patient.  They are thus variations on a 30-or-so-year-old approach of using cells that have been modified in some way to treat cancer.

The difference here is that the cells have their genes edited, and that raises potential safety risks, such as, what happens if the wrong genes are “edited,” and the altered cells go nuts and do something undesirable?  Because of this, human trials of gene editing in the U.S. are closely regulated, including having to pass scientific and safety review by the “RAC” (that’s for “Recombinant DNA Advisory Committee,” in case the acronym made any of you think of the Spanish Inquisition…then again, I have had researchers who have had to go through it suggest that the analogy is apt…).

The RAC was established back in the late 1970’s when drugs started being made with recombinant DNA, and trials of gene therapy using genes inserted into viruses were conducted.  A famous case of that work going awry raised concerns about oversight, and slowed things down substantially.  And as it stands now, the U.S. regulatory process for this work is cumbersome.  In China, not so much—a local ethics review board looks at a proposal, and off they go.  The WSJ makes it sound like informed consent for the Chinese studies may be a bit thin, too.  U.S. experts are quoted as saying not that we need less regulation, but that they (the Chinese) need more, to bring them back to our speed.

Perhaps so.  My point here is that this work is going on.  Examples like those cited here seem to me to fall under the existing regulatory regime for human trials, and don’t pose the same sort of ethical issues as the potential for inherited gene edits—that is, editing embryos and babies.  That’s a different kettle of fish.

One Chinese CRISPR trial appears not to alter cells outside the body, but actually try to administer the genetic material to make an edit to a cervical cancer-causing gene.  That poses similar safety concerns to other gene therapy approaches, including some with “zinc finger” editing technology, like a currently-active U.S. study to treat hemophilia, a disorder in which someone has a genetic flaw that makes them susceptible to excessive bleeding and the goal is to repair the offending gene.

In considering this work, I think it’s important to distinguish use of the gene-editing approach for incremental steps to treat human disease, like the cell therapy approaches, or true “gene therapy” approaches in which a “corrected” gene is administered to a patient, from the more problematic possibility of editing individuals in ways that can be inherited.  The latter is what worries me.  I wrote about this last November 9 and November 16.   And yes, the current Chinese work should be more closely regulated.  Doubt we have any control over that.

An FDA blog post from a year ago (by the former FDA Commissioner) provides a useful, brief discussion of the FDA’s approach to regulating various applications of genetic editing.  Worth reading.

What’s really happening with doctor-assisted suicide?

Recently, Wesley Smith posted on the National Review’s “Corner” blog new concerns that Oregon’s “Death With Dignity” law may not be as tightly regulated as advertised.  Specifically, a Swedish fellow named Fabian Stahle, who evidently is troubled by the prospect that his country might embrace doctor-assisted suicide, claims to have carried out an e-mail exchange with someone in the Oregon Health Authority to ask how the law is interpreted in that state.  The responses included a statement that, to qualify for assisted suicide, a patient must have a “terminal illness” but said illness could include a potentially treatable condition which, if allowed to take its course without treatment, would be expected to cause death within 6 months.  That suggests that assisted suicide might be legally employed in Oregon in cases in which the patient refused treatment or the patient’s insurance company refused to pay for effective treatment.  The Oregon official cited by Mr. Stahle is quoted by him as having written that “the law is best seen as a permissive law…[that] does not compel patients to have exhausted all treatment options first, or to continue current treatment.”

You can read Mr. Stahle’s entire account here.

I must say that, while I mention this for this blog, I have not attempted to confirm these assertions by contacting the Oregon officials myself, and my first reaction is skepticism that what Mr. Stahle reports is in fact the correct interpretation of the Oregon law.  Even I, a staunch opponent of assisted suicide, must allow that the intent of such laws seems to be that assisted suicide is intended for cases for which potentially effective treatment options HAVE been exhausted.  But I suppose that further investigation is in order.

While at it, Wesley Smith also cited a 2005 British House of Lords inquiry into the Oregon law, from which a group apparently opposed to assisted suicide posted some comments here.  The entire House of Lords transcript, BTW—all 744 pages of it!—is available here for interested parties.  I must confess I have not had time to read the whole thing.

The most recent data summary from the state of Oregon that I am aware of is for 2016.  It reports 133 deaths from taking drugs from 204 lethal prescriptions filled in the state in 2016.  These numbers were slightly down from 135 and 214 in 2015.  The 2016 “death with dignity” rate is cited as 37.2 per 10,000 deaths in Oregon.  Of the 133 people who died with medical assistance in Oregon in 2016, 96% were white, about 80% had cancer, nearly all had some form of insurance, and about 85% were age 65 or older.  The two most commonly-stated reasons for seeking assisted suicide were loss of autonomy and loss of enjoyment of life—about 90% in each case.  Inadequate pain control was listed for about one-third of the cases.  The median time the patient had been seeing his or her prescribing doctor was 18 weeks, and the prescribing doctor was present for 13 of the 133 deaths.

Of course, all of this assumes the reporting is complete and accurate.  I have no information that would lead me to believe otherwise.  I state the facts in the preceding paragraph without commentary or, in some cases, without the irony I feel in reading them.

I can’t conclude from the Oregon report that patients who availed themselves of assisted suicide there were foregoing potentially effective treatment for their disease, much less that an insurance company refused to pay for it.  Of course, there is the one famous case of a person there getting a “suggestive” note about PAS from his insurer, some years ago—I can’t locate it at the moment.

In general, I’d say that the concerns raised through the above-mentioned posts are ones we must keep in mind, but that the slope may not yet have gotten that slippery.

Finally: the National Academies of Science, Engineering, and Medicine will hold a conference in Washington DC on Monday and Tuesday, February 12 and 13.  Looks like a webcast is available.  You can find information about it, and sign up to attend in person or by the web, here.  I’m going to try to at least watch some of it. From the information at that site:

This workshop will include discussions, and background materials, that address:

  • What is known empirically about the access to and practice of physician-assisted death in the U.S. and in other countries?
  • What are potential approaches for physicians, including those practicing in states where it is legal, those who receive a request for access when the practice is legal in nearby states but not in the state of practice, and those who practice in a state where it is legal but are personally opposed to physician-assisted death.
  • What is known about how palliative care and hospice services have incorporated the practice of physician-assisted death in states where it is legal?