Caplan: New Mammogram Recommendations Accurate, but Not Right
While the data may support pushing back the timeline for routine mammograms from age 40 to 50 for women, Arthur Caplan questions the decision in his most recent MSNBC column saying that "there is every reason to doubt that the numbers they compiled will be sufficient to overturn a medical practice that carries so much ethical weight for women." More importantly, they probably shouldn't.
To read the entirety of Caplan's column, read below or click the link above.
Summer Johnson, PhD
Mammogram advice accurate but not 'right'
by Arthur Caplan, PhD
Did you hear an enormous thud around 3 p.m. yesterday? That was the sound of Secretary of Health and Human Services Kathleen Sebelius throwing her scientists under a bus.
Earlier this week, the U.S. Preventive Services Task Force, the government's major medical advisory panel, announced that they could no longer support routine mammographies for women under the age of 50 who were not in a high risk group for breast cancer.
They said that the number of cancer cases detected from such screening was too low, and that too many biopsies and further tests were being done in women who had hard-to-interpret test results but who turned out not to have the disease.
This new recommendation unleashed a tsunami of criticism from many breast cancer doctors, patient advocacy groups and women. In an msnbc.com poll, more than 80 percent of women said they were going to ignore the advice.
Emotional, snide -- and even paranoid -- accusations plagued the recommendation to end routine mammograms for women under 50. Some wondered why there were no true breast cancer experts on the panel. Still others suggested that the whole report was written with an eye toward the billions of dollars being spent on screening every year. And a few even wondered that if this was about men's health, rather than women's, would these scientists have been so quick to yank the plug on a screening test?
Critics of health reform sneered that this is what Obama has in mind for all of us if the government gets its cheap hands on health care -- cutbacks in crucial medical benefits now enjoyed by those with private insurance.
By Wednesday, Sebelius cried uncle, bulldozed over the task force and told women under 50 to forget the new advice, keep doing what they had been doing and talk with their doctors about screening.
So how did the poor scientists of the U.S. Preventive Services Task Force go from being the "gold standard" for deciding what works in medical screening (this is according to the Web site of Sebelius' own agency!) on Monday, to a bunch of irrelevant nerds by Wednesday?
That's because data and evidence have not, do not and never will be the sole determinants of health coverage.
Data-driven health care
The mission of this task force is is to evaluate the benefits of preventive services based only on data in the peer-reviewed literature and input from experts at other federal agencies like the Centers for Disease Control and Prevention, the National Institutes of Health, Veterans Affairs and other professional medical groups.
They are instructed to make their recommendations about the value of screening tests, such as mammograms, with little attention to the economic cost to society.
The critics were right about one thing: It is true that the committee recommendations are the sort of thing the Obama administration has in mind as part of health reform. But not as a way to ration care for the insured. The administration has been talking endlessly about using better data to figure out what works and what to pay for.
In this case, the task force found that screening all women in their 40s led to too many false positives and too much unnecessary follow-up testing for the number of lives it saved. They did not say that no lives were being saved. They said not as many as everyone thought. And not enough to justify asking every woman under 50 to get a mammogram every year.
Well, women fear breast cancer. So do their husbands, brothers, sons and fathers. There is no way testing for an especially dread disease that is at least somewhat effective is going to be cut back without screaming protests.
What's accurate vs. what's right
The data does not tell us what to do in setting a standard for testing or paying for it -- ever. We have to base these kinds of decisions on both data and values. How much do we fear getting a disease? How much are women willing to go through to avoid getting it? How much do we value saving younger lives and those of mothers of young children? These are as much ethics and policy question as they are issues of the facts.
Equally important, once a practice is firmly in place, such as screening for breast cancer, it is very hard to change beliefs and deeply held convictions overnight. If you tell women to get tested early and often for the better part of two decades, if you tout early detection as one of the triumphs of the "war on cancer" and if you stick breast self-examination cards into every shower stall in America then one day say, er, nevermind, forget it -- don't expect that to go down very well.
Screening is what responsible and health-conscious women do to take control of their bodies and prevent disease. Those are commendable and powerful virtues, and -- it seems --more compelling than a pile of bland data.
Doing the right thing and taking the time to protect yourself against breast cancer has moral weight that policy makers, as Secretary Sebelius found out, ignore at their peril.
There is no reason to doubt the accuracy of the scientists' finding that evidence does not support routine mammography for most women under 50. But there is every reason to doubt that the numbers they compiled will be sufficient to overturn a medical practice that carries so much ethical weight for women.
Give Me ObamaCare and Give Me Your So-Called "Death Panels." It's Surely Better Than What We Have Now.
The conservative blog, mercatornet.com, invited yours truly to be part of a debate on health reform, the controversy over so called "death panels", and my views on the future of the American health care system.
The piece written in opposition to mine can be read here, but I can summarize it quite quickly: Ms. Valko support Sarah Palin's view that "death panels" are on their way or may already be here and that we have much to fear from the BIG, BAD GOVERNMENT and that anyone who has a disability or who is less than perfect will be cast aside in the Obama regime.
Hogwash.
My column is also posted in full-text below or can be read by clicking here. You can read my views below, so there's no need to summarize them here. But if you can't intuit them from the title, I'd be surprised.
Summer Johnson, PhD
Give me ObamaCare and my grandmom is doomed?
What is the system now?
The current United States healthcare system can be summarized in a few words: under-performing, over-priced, and inequitable. Unlike the UK or Canada, the US has for a large employer-based healthcare system, which means that many -- children and adults -- receive healthcare benefits via their employer. The remainder receives benefits from three other government sponsored programs: Medicaid (for those of a socioeconomic status too low to be able to afford to pay for health insurance and do not qualify for employer-based insurance) and Medicare (for those over the age of 65) and the Veterans Administration system. There are a few other categories of individuals who qualify for these government programs including the chronically disabled, etc, but this is it in a nutshell.
So if I had to add a fourth word to describe the United States healthcare system I would use: potpourri; and I don't mean the good smelling kind. I mean a mish-mash of systems and providers. Worst of all, when the United States has an unemployment rate of 9.5 percent as of October 2009, this adds another nearly 10 percent of people who cannot receive insurance via their employer. This is where an employer-based system of providing healthcare coverage breaks down.
There must be another way. Millions of Americans are using COBRA (short-term gap coverage for recently terminated employees offered by employers) now subsidized by the government now under ARRA, plus Medicare, plus Medicaid. Thus, the public option so hated by critics of reform is doing quite well, thank you, IS effectively providing health insurance for a HUGE proportion of the nation. Failing to extend insurance options to the rest of the American 45.7 million Americans is a true moral failing.
What will the new system probably look like?
The "new system", most commonly known as the "public option", scares many people because critics have obscured the fact that most Americans use government sponsored healthcare -- including everyone in Congress.
However, in fact the current proposal passed by the House of Representatives this past Sunday simply adds one more option to what everyone has. There will still be private insurers; patients will still be able to choose whatever doctors they want. Choice will still be a huge part of the "new system."
"So what has changed?" one might ask. The federal government is guaranteeing that there will be a federally run insurance program that will be available to all Americans, the same insurance program that Senators and Congressmen use, and it will allow an additional 90 percent or more of uninsured Americans to have access to health insurance. This program is most likely to be utilized by the young who cannot afford insurance premiums in the earliest years of their careers and the working poor who cannot afford premiums or who are not offered insurance in their jobs. The program will compete directly with private insurers, hopefully driving prices down, and creating greater competition in the healthcare market -- something all free market capitalists love! This could result in a reduction of premiums by 25 percent within the next 5 years. Yet private insurance plans will still exist and will still be available just as they always have been -- so the employer-based insurance system we know and some love will persevere.
This system would allow for public provision of health insurance options with the provision of care from any provider patients choose. This kind of system would put us in very good company. Canada, Western Europe, Japan, Australia, New Zealand and Taiwan all do it -- and with far better health outcomes and far less healthcare spending.
Is the fear over Obamacare "death panels" exaggerated?
Absolutely.
I mean, come on, "death panels"? When I first heard this expression, I assumed that the Grim Reaper would be one of the committee members.
Then I read the ridiculous stories about how Ezekiel Emanuel wanted to kill my grandmother, I laughed out loud. Anyone who ever has even met Zeke knows that he's an oncologist by medical training and would prefer that people NOT die of cancer, for one, or anything else for that matter.
Second, his argument -- --which is actually quite sound -- simply says that we have to allocate effort to different cases according to those who will receive the most benefit from the care we give them. This is the nature of rationing, which all healthcare systems have. So tough choices have to be made in situations when there are scarce resources. But on these panels, no one is going to make decisions about individuals. No one is going to say, "Washington is calling. It's time to turn off Grandmother's ventilator. She's costing the public health insurance plan too much money."
Americans have to trust someone to make the big decisions. For more than 40 years they have trusted private insurance companies, whether they have been aware of it or not, to make the decisions about whether Aunt Sue gets that angioplasty or that new drug. It really isn't the doctor. Doctors recommend; insurers approve. Anyone who has ever received a denial letter from an insurance company knows that.
So the question is whether Americans are willing to trust the United States government to set the healthcare budget and provide a third way to have access to healthcare for all, reduce overall healthcare spending, and hopefully over the long term improve healthcare outcomes.
I can't see how we can do worse than we are doing now. I really can't.
Can you trust members of the ethics committee to treat patients with dignity?
Healthcare professionals treat patients with dignity, not government panels. They take their needs and interests into account. But it is doctors who provide the care, not health policy advisors.
In the context of health reform, it is the job of policy analysts and health advisors to ensure that the system will provide the well, the sick and the dying with adequate care.
Much ado has been made of President Obama's "Independent Medicare Advisory Panels", but I would happily put Harvard's Atul Gawande MD and the National Institutes of Health's Ezekiel Emanuel MD, PhD in a room with former Governor and vice-presidential candidate Sarah Palin and let them duke it out over health reform any day and let the chips fall where they may. They have two MDs and one PhD on their side; she has rhetoric and a moose gun.
Yet, Palin tries -- and fails. She has supported reimbursement for time spent counseling for living wills and advanced directives (even though the latter do not work); it's the prior conversations between loved ones and the dying that matter, not the piece of paper
Yet Palin's attacks upon the (imaginary) pro-euthanasia bioethicists are clear. When talking about "Obamacare", she has described it as a "system [that] is downright evil". She refuses to accept a healthcare system where her parents or her child would have to stand "in front of Obama's 'death panel' so his bureaucrats can decide, based on a subjective judgment of their 'level of productivity in society' whether they are worthy of healthcare".
Yet I wonder what Ms Palin (and others who support her view) find more morally reprehensible: leaving 47 million Americans without any access to health insurance AT ALL or creating a government panel that would make decisions about how much care would be given to which Americans, all of them having had access to health insurance over their life span.
And yes, Ms Palin, that might mean that your aging parents might not get that third bypass surgery or that state-of-the-art hip replacement over providing well care for all children. Or is it "downright evil" in your view to leave the most productive members of our society -- the chronically underinsured or uninsured Americans aged 18 to 34 -- without access to affordable healthcare coverage? I wonder, is she or anyone else okay with leaving young women to die because they are unmarried and uninsured?
Generally, though, I am more sanguine than most about the ability of ethics committees or commissions to make good decisions about what should be done in terms of making policy. I think what patients don't realize is that most decisions about what kinds of care and what procedures are covered and in what amounts, about what percentages of procedures are paid versus unpaid, and about the reasons for all this, are actually done by committees. But in the current system, it's all done behind closed doors inside meetings of actuarial scientists and executives at pharmaceutical benefits companies and insurance companies.
So let me ask you this.
Would you rather have your healthcare decisions made out in the open as part of public debate by a public committee comprised of ethicists, public members, politicians, health policy analysts and others who specialize in making these kinds of decisions on a large scale to save taxpayers money -- or by the (much more) self-interested persons who work for the companies who have a bottom-line to make for their pharmaceutical benefit management company, insurance company and its shareholders?
For my money (and my health), I'd opt for the public panel any day.
**Thanks to Myra Christopher and Arthur Caplan for comments on previous drafts of this post.
Caplan: Swine Flu Response Isn't Even Worth Sneezing At
For all the planning, prioritizing, and head scratching done by state and federal governments for the coming H1N1 flu crisis this fall, we still have fallen short, says Arthur Caplan in his most recent MSNBC column.
Why? The reasons are plentiful, but if you ask me the answer is simple: a public health infrastructure so weak that I've seen spider webs that provide more protection against passing threats.
Caplan blames whining healthcare workers, too little vaccine and a number of other causes, but I'll let you read the essay yourself below or by clicking the link here. But no matter who's analysis you believe, it's clear---the swine flu response is pretty darn poor and shows no signs of getting better, and its our children and their caregivers who are paying the price--with their health.
Summer Johnson, PhD
U.S. swine flu response dismal at best
by Arthur Caplan
Few seem to want to say so, but this nation has mounted a dismal response to the swine flu epidemic.
By dismal I mean this: There's not nearly enough swine vaccine to go around, there are conflicted messages about when the doses and antiviral supplies will arrive and half of all Americans are reporting they are too afraid to get the vaccine even if they are able to find it.
Health care workers are throwing fits when directed to take the vaccine, even if they work around high-risk patients, and there's a breakdown of a strict distribution system to make sure the vaccine we do have is used to protect and save the most lives.
We have had the better part of a year to get ready for swine flu. And yet, the response to the pandemic H1N1 outbreak has been lousy. What would happen if a hostile power launched a large-scale bioterrorism attack against us with no warning?
The Obama administration bears much of the blame for the fear the public and health care workers have of the swine flu vaccine. The facts do not square with the fear.
Numbers of sick and dead are mounting
At least 129 have died in the United State from swine flu. Eighteen children died last week. Public health officials estimate that at least 1,000 adults have died so far from swine flu in this country alone. Hundreds have faced life-threatening hospitalizations. Millions more have been terribly sickened and lost time from work.
The fear factor is simply confusing. To put it bluntly, it makes no sense to be more afraid of the swine flu vaccine than the actual H1N1 flu. No vaccine in the past two decades has killed nearly so many children and adults. Yet, somehow the administration, public health officials and organized medicine and nursing have lost the battle to overcome fear, ignorance and just plain kookiness when it comes to the importance of vaccination for those at greatest risk.
Worse, efforts to tell health care workers -- health care workers! -- that they must get vaccinated if there is vaccine to give them have faltered. Nursing unions are in court arguing that they should have a right to choose when it comes to vaccination.
Few leaders in medicine or public health -- much less the White House -- have spoken up and said that if you are a health care worker, your ethical promise to put the health and safety of your patients first means you have an absolute duty to get vaccinated against both seasonal flu and swine flu unless you have a serious medical reason not to.
Some media outlets and blogs are not helping, either. There are way too many stories about screwball theories insisting that the pharmaceutical industry is pushing vaccination on innocent children for profit, alongside equally nutty and nonsensical recommendations to use garlic, echinacea, astragalus and "immune system" vitamins to fend off a virus that can kill pregnant women and babies.
The idea that garlic is effective against both vampires and viruses would be funny if it were not for the fact that people are dying. Should we face a more serious biological threat, many more people who are happily putting rubbing alcohol up their noses, not getting their kids vaccinated and swilling Chinese teas will die.
One very clear lesson from the current swine flu epidemic is that our safety and security demand much more in terms of effective public education and communication then we have seen to date.
Flunking the swine flu test
When it comes to the effective distribution of the swine flu vaccines and drug supplies we do have, America is flunking the test. Every day I listen to hospital officials complain that they cannot get enough vaccine, or even ANY vaccines, to take care of their high-risk patients and their staffs.
Yet, some swine flu vaccine, according to recent press accounts, has been released to more than a dozen companies including Wall Street firms Goldman Sachs, Citigroup and JP Morgan Chase. Some professional sports teams have gotten vaccine and vaccinated their players and coaches.
When politicians have bothered to get involved in talking about swine flu and what to do about it many have spent that time sounding like fools. Perhaps the best example has been the rhetoric directed at the idea that prisoners, including those at Guantanamo Bay, ought not to get vaccinated.
The posturing before the cameras in a competition to offer the worst advice has been a rare example of bipartisanship. Sen. Joe Lieberman, I-Conn., Rep. Bart Stupak, D-Mich., and the ever mind-numbingly off-base Rep. Roy Blunt, R-Mo., screamed that "accused terrorists will be first in line for H1N1 vaccines." At least Blunt remembered that they are only accused.
The point, however, is that even if you don't give two hoots for those stuck in limbo at Guantanamo or locked up in prisons and jails all over the nation, these prisoners pose a huge threat to you.
Prisons are prime breeding grounds for disease, including swine flu. The prisoners infect the guards who bring the virus home to their pregnant wives and kids. From there, it moves out into the neighborhood, the school, the airport and beyond.
Examine response for future crises
I am sure the crowd imprisoned at Gitmo will be happy to do their best to infect our troops. If you want to control the spread of swine flu, the best move is to vaccinate prisoners -- whether they want to be vaccinated or not.
We are not doing a good job with swine flu. We need a national commission to review what has gone wrong with the response to the pandemic. And that same commission needs to take a long hard look at the lessons we need to learn before the truly nasty bug or batty terrorist packing anthrax, botulism or tularemia shows up on our shores.
The November Issue of AJOB Is Now Online!
With H1N1 and flu vaccines on everyone's minds, the November issue of The American Journal of Bioethics couldn't be more timely. What do people think about the measures necessary to protect ourselves from flu? Do we, or more importantly should we trust our government to protect us in a pandemic?
Baum et al ask these questions and more and conclude that in a flu pandemic the public is likely to resist precisely those public health measures that work--like social distancing--because they are impractical and to be distrustful of our government.
Also in this issue is Zivotofsky and Jotkowitz's response to Dignitas Personae, or "A Jewish Response to the Vatican's New Bioethical Guidelines", as they call it. Open Peer Commentators from all faiths, as well as secular authors, respond.
In this issue's third target article, Burris and Davis consider the question of whether researchers have a responsibility to assess social risks of research prior to conducting it. Respondents to this Target Article come down on both sides: some concluding this is too burdensome for researchers, others concluding this is the work of an IRB and does not require additional empirical research, others arguing for precisely this kind of empirical data (more data, more data, more data).
So whether you are interested in pandemic flu, research ethics, or stem cells and religion--this issue of AJOB has something for you. Check it out today, and all month, on bioethics.net.
Summer Johnson, PhD
Q & A on What is a Blockbuster Anti-Wrinkle Cream Worth, Morally Speaking
Or How Many Fetuses Does It Take To Make a Great Cosmeceutical
Question: What is it worth to produce a blockbuster anti-wrinkle cream?
Hypothetical Answer from Cosmeceutical Company: A single skin biopsy of a 14-week old voluntarily aborted fetus from a minor with consent from her parents.
Question: What is it worth to produce a blockbuster anti-wrinkle cream?
Hypothetical Answer from Any Pro-Life Advocacy Group: We see aging as a natural part of the human life span, but if companies want to do this research it is absolutely fine to use morally acceptable alternatives to embryo and fetus research such as animal research or collagen, as you promote human dignity.
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Walking through the cosmetics aisle at your local pharmacy or department store, you might not be able to distinguish Neocutis from any other of the high priced facial creams that promise women (and men) a younger, fresher, wrinkle-free face. Nearly every facial cream, cleanser, and mask is chocked-full of the sorts of exhilarating and yet seemingly possible promises that make us want to run out and buy a tube of the latest and greatest face flattening, plumping or softening cream makes us feel hopeful that immortality or at least (superficial) youth is just one swipe of the charge card away.
One more addition to this increasingly crowded market of products is Neocutis, a Swiss product made of PSP (processed skin proteins) which promises to treat everything from eczema to psoriasis to severe wounds to wrinkles and more.
But here's the catch: these "processed skin proteins" are derived from the cell lines of a single set of skin cells from a 14-week old aborted male fetus in Switzerland.
They were harvested as a result of an abortion from a young girl whose parents, according to the Neocutis website, gave consent for to the abortion and to donate the body of the fetus to medical research. Thus the Lausanne, Switzerland company took those cells and made the proteins into what by many accounts to be a wonder-cream for repairing damaged skin.
Whether the abortion was elective or medically required remains under debate whether one believes the pro-life version from the World Net Daily crowd or the Neocutis website on responsible use of fetal skin cells. My guess is that the truth is somewhere in between.
Regardless of the reasons why the abortion took place (the facts are unclear), one can only hope the young girl and her family were not induced to undergo the abortion for financial reasons. Setting that aside, the more compelling ethical question remains: what moral complicity exists for those who choose to put fetal skin protein creams on their faces? Do the purchasers of Neocutis in fact endorse the use of fetal tissue for medical research generally or specifically for cosmetic research?
Of course, they do. Beyond that, the cautionary tale here is that absent clear labeling that says "This product contains embryonic, fetal or other kinds of tissue, cells, or their derivatives" our cosmetic aisles are about to very quickly to become filled with thousands of products that contain precisely the biological materials that consumers would have no idea they are smearing on their faces.
Yet for some, this will have no moral implication at all. For them, fetal proteins in a face cream aren't any different from animal or plant protein because for them the moral status of the aborted fetus doesn't have the moral status to give one concern if consent to both abortion and research took place.
But for many, it would be unthinkable to fetal ANYTHING into their deepening wrinkles to make them become less so. In fact, many would rather have crow's feet deeper than the Grand Canyon than have a fetal tissue cell touch their face as a result of their moral conviction. And for them, more power to them.
However, for those women who voluntarily elect for whatever reason do donate their aborted fetuses to science, we certainly ought not to discourage them. It can for many turn a gut-wrenching decision into something that makes them feel they have given something back to society. However, dialogue is necessary as to what sorts of uses those precious resources ought best to be used.
$100 or more tubes of face cream are a rather low priority compared to the hundreds to thousands of other research priorities that still exist for these cells and tissues. Personally, I neither believe in their entirety Neocutis' press materials or the pro-life website's versions of the story surrounding this woman's gift. Absent those facts, I think all we can really ask ourselves is "Do we really want to "vote with our wallets" and purchase products with contents procured by morally questionable means? With the verdict still out, my wallet will be voting no.
Summer Johnson, PhD
Bioethics Needs More Than Number Crunchers, says Caplan
Even as one trained in said number or data or fact crunching--whether you want to call us social scientists or empirical bioethicists or what have you--I do not take issue with Caplan's essential view--bioethics needs more than just facts to do its job well--it needs those who can argue and educate as well, too. I'll call that the bioethics trifecta. Ideally, a bioethicist would be able to do all three--collect, analyze, and discuss and/or disseminate one's data in the literature, engage in a sound moral argument, and be able to educate the public about bioethical issues.
That doesn't seem like too much to ask. But hardly anyone is trained to do so. I think that was Zeke's point.
But in any case, Caplan's argument is below. Btw, it is passing through the digital world of 1s and 0s that comprises "the new bioethics" grapevine more quickly than anything I've ever seen. How ironic is that?
Summer Johnson, PhD
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Facts alone won't suffice for the field of bioethics
by Arthur Caplan
When you get old enough as a practitioner in any field young people seek your advice about what they should do if they want to do what you do. Given that my age seems to be increasing exponentially this has been happening to me with increasing frequency. Undergraduates, high school students, medical students, those pursuing degrees in law and nursing and even those interested in a mid-career change have been asking me what they need to do if they want to pursue a career in bioethics.
I have thought about their question quite a bit. I have come to realize that the answer is not the same for everyone who presents the questions. But, the core of the answer is pretty much the same; pursue masters level training in bioethics, acquire familiarity with key social science methods and tools, learn something about a particular sub-area of the health sciences or life sciences and, seek out every opportunity to fine tune your analytical and rhetorical skills by working with others on projects, research, consulting, or teaching activities. At its heart bioethics is an interdisciplinary activity and knowing how to work with others who do empirical, historical, legal and normative work is a must.
I had thought that advice to be sound until I heard Zeke Emanuel's plenary address to open the most recent annual meeting of the American Society of Bioethics and the Humanities. Zeke espoused a vision for future bioethicists that I think is narrow, misguided and wrong. Now I say that in the spirit that Zeke himself enjoys--vigorous debate about a matter that both of us consider of the gravest importance.
Zeke Emanuel, a physician with a degree in political science as well, is one of the best and brightest scholars in the field of bioethics. His writings are solid and exemplify how best to integrate empirical inquiry with normative analysis. And the 'shop' he has run at the NIH Clinical Center for many years prior to moving into the Office of Budget and Management to work on health reform has done an outstanding job training younger scholars in the ins and outs of bioethical inquiry. These facts are precisely why Zeke's recent plenary address to the American Society of Bioethics and the Humanities was so disappointing.
Zeke began his speech by joking that he knew much of what he had to say would annoy his audience. He then proceeded to argue that the future of bioethics and of bioethicists depended upon the field moving away from its high public profile in political, media and policy debate. What bioethics needs, he argued, is a beefing up of the shabby empirical foundation it now relies upon for its normative and policy claims.
The only way for bioethics to flourish, to paraphrase Zeke's key contention, is if bioethicists spend less time in public places, more time mastering quantitative methods and publishing empirically grounded research on topics such as informed consent and surrogate decision-making at the end-of-life in peer-reviewed journals. He also went on to add that he did not find any merit in masters programs or PhDs in bioethics since without a more robust empirical foundation there could be little value in such training.
A young, wanna-be bioethicist, Zeke contended, would be best served seeking training in behavioral economics, psychology, decision theory or perhaps, he grudgingly conceded, sociology. Those armed with these tools could be expected to create the rigorous empirical foundation that bioethics now sorely lacks. Moreover, Zeke predicted, those willing to enter bioethics by heading down his prescribed path can expect generous financial support in the form of a pot of gold provided by a National Institutes of Health poised and eager to provide funding for rigorous research.
Before any prospective bioethicists answer Zeke's clarion call for rigor by dusting off their applications to departments of economics and the behavioral sciences let me try to point out why Zeke's vision about what bioethics should be is severely myopic as well as inadequate.
Zeke's call for bioethics to take a sharp empirical turn has power because it is embedded in his talk of the importance of data and rigor. Both are indeed important for bioethics for a variety of reasons. But, neither will get bioethics where it needs to be if it is to serve health care providers, patients, policy makers or the public.
Bioethics, in my view, has a duty to engage the public with bioethical questions. The topics that bioethics grapples with--how to manage dying, the use of reproductive technologies, what to do to maximize the supply of transplantable organs and tissues, how best to promote clinical and animal research, what information you should expect to receive as a patient about your diagnosis and treatment--are of keen importance and legitimate interest to everyone, rich and poor; young and old around the globe. Part, albeit part, but nonetheless a crucial part of the bioethicists role is to alert, engage and help to illuminate ethical problems and challenges both old and new in the health and life sciences. Note I do not say to solve them nor to be seen as an authoritative source to whom bioethical issues ought be assigned. Rather bioethics' role is both Socratic and prophetic--challenge, probe, question, warn, chastise, alert, and, as Zeke appreciates, irritate the powers that be when necessary.
In this role of moral diagnostician bioethicists must be responsible and strive for clarity in provoking public attention and debate. However, in this role data is often absent, in dispute or woefully poor. In addition questions loom large and pressing, passions run deep and fear and ignorance are omnipresent companions to doing bioethics with an eye toward helping the public understand issues and options. To engage in the public role that bioethics has and should enthusiastically continue to play in the media, policy, education, legislation and the law more tools are needed then empirical data no matter how rigorous or precise that data and the means used to generate it may be.
One must be able to present a cogent argument, know the areas of consensus that have been established about ethical issues over the history of medical ethics and bioethics, have a familiarity with health law, the infrastructure of policy and a grasp of political, cultural, literary, historical and social dimensions of what makes morality tick in various cultures. In the absence of these skills and knowledge data is completely and utterly blind, even useless. That is why it is precisely this skill set that the aspiring bioethicist should expect a masters program or a PhD program in bioethics to provide in order to gain the analytical and argumentative skills to competently and responsibly carry out the crucial public role bioethics has.
At the end of the day bioethics is a public activity which uses empirical inquiry and information as a tool. Admittedly empirical data are the most important of the tools in the bioethicists toolbox but still they are only one of the types of tools that are used.
Zeke's vision of bioethics completely confuses the instrument--compiling reliable empirical information relating to normative issues--with the job--informing the public about problems, options and suggesting possible avenues for their resolution.
Zeke's vision makes a bit more sense if one focuses on the role that bioethics plays within health care for professionals and institutions. There bioethicists often act as consultants or help formulate policy in ethically contentious areas working with providers and administrators and sometimes even payers. But even in this setting, while data is often essential it is never sufficient. Much of what occurs in doing an ethics consultation, for example, has as much to do with knowing how to mediate a dispute as it does a recitation of the facts of a case or having at hand well-supported information about the consequences of various courses of action. In many other situations the 'facts' are not known and won't be known--ever because the human interactions are too complex. Bioethics at the bedside is very much an ethical, social and personal activity and while data has a part to play it has about as much a part to play as it does in our everyday lives and decisions which is to say--sometimes it matters, often it does not.
Before the young bioethicist is told to follow Zeke's path of empirical positivism consider one other fact. We will not in our lifetime or that of our children ever achieve the kind of empirical certitude about much of anything of the sort that Zeke suggests will help future generations of bioethicists do their work. For every ethical problem for which sufficient data exists to point toward an answer a hundred blossom for which the data don't. For every ethical problem for which sufficient data have been assembled to make an answer rational, sensible, or even self-evident there are many where behavior, policy and practice do not and cannot be made to conform to that data. Sometimes data alone can point toward an answer. Almost always, however, it is a prior moral argument that points toward the use to which data will, could and ought be put whether that be in medical practice or in medical ethics. And more often then not moral and value arguments simply moot data and that situation cannot be rectified by appeals to more data.
Zeke ended his remarks that day by acknowledging he was not really trying to end the public role or policy dimension of bioethics. Rather he was just trying to reorient the field's priorities. I would suggest Zeke be heeded but only half-heartedly.
More data is needed in bioethics. More scholars with empirical quantitative skills are needed. That said, if the goal of bioethics is not simply to produce every-increasing amounts of NIH funded empirical data but rather to make a difference for the better in the lives of patients, their health care providers, scientists, and the general public then what we need and will continue to need are bioethicists who know their history, understand the power of cases, stories and analogical reasoning, can mount cogent, coherent arguments based on the best information at hand, who are comfortable talking with a state legislator, an NIH institute director, a TV talking-head, an athletic coach, a small town family doctor and a minister. Aspiring bioethicists would be well served to develop that full skill set and to seek out bioethics programs that can teach them to meet all of those needs.
Should Hwang Do Time in the Big House?
For the disgrace and shame he placed upon stem cell research in South Korea and for many stem cell research more generally, he should do some time in the slammer. Or at least that's my view.
But Nature.com tells us that Woo Suk Hwang's verdict is imminently on the horizon and that he may do jail time for violating that country's bioethics law.
So while we wait on the edge of our seats for the gavel to drop in Seoul's Central District Court Criminal Division, send in your comments. Should Hwang, arguably stem cell research's most notorious not-yet-convicted crooks, go to jail?
Summer Johnson, PhD
Is Nanotechnology the Key to Happiness?
Nanotechnology has been called a great many things--the great leveler, the panacea to all that ails the world, the technology that will allow us to solve all of our problems from world hunger to pollution.
But this month, at nanotechnow.com, Tihamer Toth-Fejel makes the rather provocative claim that the "exponential nanomanufacturing capabilities of Productive Nanosystems will simply enable us" to fulfill human needs and desires (of all kinds" better. That's a pretty sweeping statement, if you ask me. And I'm pretty sure that I don't buy it. In fact, I'm pretty sure that if that were true it would come at such a radical cost or at least change to the world as we know it that we wouldn't recognize our world, or ourselves, in this "Productive Nanosystem Planet" Toth-Fejel describes.
But you don't have to take my word for it. You can read his argument yourself and decide whether you think nanotechnology is the key to fulfilling all human desires, wealth and happiness. I just wouldn't bet the bank (or mine), or my future's happiness, on it.
Summer Johnson, PhD
Yes, Today. Snowe, Tomorrow?
According to the WSJ Health Blog, Senator Olympia Snowe of Washington State is making no promises as to whether she will continue to back the Senate Finance bill for health care reform.
Why does this matter? For any one who has been even following this train wreck / folly of the last few months to get health care reform passed by the United States Congress knows that where Madame Snowe goes the rest of the the Senate has tended to follow because for this Republican to back a largely liberal bill means something....just ask Fox News.
But she offers little real comfort or assurance that she will stick with her position for good, which means that the ups and downs of this debate of will or won't health care reform be passed is likely to continue a little bit longer.
So we'll all keep biting our nails and hoping...it could still be a bumpy ride to the finish line.
Summer Johnson, PhD
Yes, Today. Snowe, Tomorrow?
According to the WSJ Health Blog, Senator Olympia Snowe of Washington State is making no promises as to whether she will continue to back the Senate Finance bill for health care reform.
Why does this matter? For any one who has been even following this train wreck / folly of the last few months to get health care reform passed by the United States Congress knows that where Madame Snowe goes the rest of the the Senate has tended to follow because for this Republican to back a largely liberal bill means something....just ask Fox News.
But she offers little real comfort or assurance that she will stick with her position for good, which means that the ups and downs of this debate of will or won't health care reform be passed is likely to continue a little bit longer.
So we'll all keep biting our nails and hoping...it could still be a bumpy ride to the finish line.
Summer Johnson, PhD
