Science

The Presidential Commission on Birth, Death, and the Meaning of Life

Obama's new bioethics czar just wants us all to get along.

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In November, President Barack Obama issued an executive order establishing a new Presidential Commission for the Study of Bioethical Issues. He appointed political scientist and University of Pennsylvania president Amy Gutmann as the chair of the new Bioethics Commission. Such commissions are charged with working through tough questions about intellectual property rights, the protection of human research subjects, scientific integrity and conflicts of interest in research, and the intersection of science and human rights. In his order, the president empowers the commission to "identify and examine specific bioethical, legal, and social issues related to the potential impacts of advances in biomedical and behavioral research, healthcare delivery, or other areas of science and technology."

So how might the new Bioethics Commission operate? Fortunately, we have some idea because its new chair, Amy Gutmann, outlined her views on how bioethics commissions should be run in an article, "Deliberating About Bioethics" in the Hastings Center Report back in 1997. Most of the 13 member panel hasn't been appointed yet, but Gutmann is well-known for her scholarly work on deliberative democracy, which she defines "as a form of government in which free and equal citizens (and their representatives), justify decisions in process in which they give one another reasons that are mutually acceptable and generally accessible, with the aim of reaching conclusions that are binding in the present on all citizens but open to challenge in the future."  

In her article (co-authored with political philosopher Dennis Thompson), Gutmann distinguishes deliberative democracy from proceduralism and constitutionalism. In proceduralism, once basic rules of the game have been hammered out, moral disagreements are resolved through political bargaining or by moving them out of politics into the private sphere. Constitutionalism tries to avoid moral disagreement by creating a sphere of protected rights that are shielded from ordinary politics.

In Gutmann's conception, deliberative democracy is an ongoing, transparent, society-wide discussion of fundamental values. Deliberative democracy is supposed to serve four important social purposes by addressing four ineradicable sources of moral disagreement. She identifies the four sources of moral disagreement as arising from (1) the scarcity of resources; (2) limited generosity; (3) incompatible moral values; and (4) the incomplete understanding that characterizes almost all moral conflicts. The four social purposes that deliberative democracy is supposed to address are (1) the promotion of the legitimacy of collective decisions; (2) the encouragement of public-spirited perspectives on public issues; (3) the promotion of mutually respectful decisionmaking: and (4) the correction of inevitable collective action mistakes.

Gutmann offers some concrete examples of how she thinks deliberative democracy might work. Let's take scarcity. She notes that far more people need organs than there are organs available for transplant. How do we decide who gets them? She suggests that "deliberation can help those who do not get what they want or even what they need come to accept the legitimacy of a collective decision." As it happens in 1984, the U.S. Congress passed the National Organ Transplant Act which made organ sales illegal. Since then donated organs have been allocated by the United Network of Organ Sharing based on various medical criteria depending on the specific organ. Although some voices (including mine) have been arguing for compensating donors as a way to increase supplies, it is true that there has not been much public pressure to change the current system. However, one hopes that the deliberative process will someday correct this particular collective action mistake. On the other hand, we can expect a lot more bioethical deliberation if the U.S. adopts a more centralized and increasingly government-controlled health care system. In another article Gutmann favorably cites the United Kingdom's National Institute for Health and Clinical Excellence (NICE) as an example of how democratic deliberation works in making decisions about what medicines and treatments will be made available to patients in that country's National Health Service.

The next issue is limited generosity. Gutmann acknowledges, "Deliberation will not turn self-centered individualists suddenly into public-spirited citizens." She argues that members of bioethics commissions should not be chosen just to represent specific interest groups; that would simply result in old-fashioned interest group bargaining. Gutmann asserts that the number and diversity of voices on a bioethics commission is not necessarily the most important factor in making deliberation work. Instead bioethics commissioners "must come to the forum open to changing their own minds as well as to changing the minds of their opponents." Bioethics commissioners will be more amenable to changing their minds on such limited questions as when is it appropriate to include minors in medical research rather than issues like abortion and assisted suicide.

Which brings us to Gutmann's third source of moral disagreement—incompatible moral values. Here she recommends that bioethics commissions isolate irresolvable conflicts and focus on areas where agreement might be possible, e.g., minors in medical research. As an example of how deliberation can "economize" on moral disagreements, she cites the fetal tissue research guidelines issued in 1975 by the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The commission held extensive public hearings and consulted legal experts, scientists, ethicists, and philosophers before promulgating its regulations allowing fetal tissue research. Those regulations included the requirement that researchers seeking to harvest tissue not have any part in the timing, method, or procedures used to terminate a pregnancy; no inducements to terminate a pregnancy could be made; both parents must consent; and artificial life support for nonviable fetuses was prohibited. But this deliberative outcome did not hold. In 1988, arguing that the fetal tissue research could encourage abortion, the Reagan administration imposed and later the Bush administration maintained a federal funding moratorium on fetal tissue transplant research. The moratorium was lifted by President Bill Clinton in 1993.

The history of the bioethical deliberation over fetal tissue research might be seen as an example of Gutmann's fourth purpose of deliberation, the correction of mistakes. In the fetal tissue case, later experts did argue that political appointees under Reagan and Bush were mistaken in their belief that federal funding of fetal tissue research would lead to more abortions. On the other hand, given that a National Institutes of Health advisory panel in 1988 recommended after considerable deliberation that the moratorium be lifted, one suspects that the encourages-more-abortions argument for banning federal funding was a stand-in for a deeper philosophical repugnance toward all abortion. In any case, the fetal tissue case and President Obama's decision last year to overturn President George W. Bush's limits on federal funding of human embryonic stem cell research shows that bioethics decisions in the U.S. are already provisional and open to challenge.

I generally agree with the proceduralists and constitutionalists. In order to keep the social peace and allow various visions of the human to flourish along side of one another, certain big questions about birth, death, and the meaning of life must be isolated from politics, making them private concerns to be protected from majoritarian tyranny. But for her part, Gutmann concludes hopefully, "By making democracy more deliberative, we stand a better chance of resolving some of our moral disagreements, and living with those that will inevitably persist, on terms that all can accept." Given the current stark polarization that characterizes our national political institutions (if not public opinion), Gutmann, as head of the new Presidential Commission for the Study of Bioethical Issues, has her work cut out. Good luck to her.

Ronald Bailey is Reason's science correspondent. His book Liberation Biology: The Scientific and Moral Case for the Biotech Revolution is available from Prometheus Books.

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  1. She suggests that “deliberation can help those who do not get what they want or even what they need come to accept the legitimacy of a collective decision.”

    Or, “rather than letting a free market provide you with what you need to stay alive, you can lie there dying while reflecting on how “legitimate” the collective decision to let you die was”

    1. Good luck to her.

      I say, tell her to fuck off, for reasons enumerated above.

  2. The alt-text is hilarious. Bravo, Ron.

    1. I love the minimalism of the wording, set against the stark contrast of the snarkenfreude of this website.

      1. It’s like a haiku for a haiku.

        1. Dammit, guys. I closed Firefox (ad-blocker erased the pic) and opened IE just to check the “hilarious” alt-text.

          In Internet-effort, that was like building the Hanging Gardens. Now I’m tired.

          1. It was evil for me to play along with SugarFree’s deadpan criticism of the alt-text. Nay, it was Episiarchian of me.

          2. My work here is done.

            1. So your whole plan was to make FrBunny open IE? Your subtle machinations are too subtle.

              1. You think that’s subtle? SF rigged the 2000 election just to convince his buddy it really is pronounced “NOOK-yoo-ler”.

              2. fired an arrow
                without knowing the target
                hand eye mind are one

          3. You need to change your adblock settings.

            1. I manually block all the pics after I see them once. Makes for safer cube-surfing.

              Clearly there is a downside.

              1. I wonder if the IOC will recognize cube-surfing in time for 2012.

          4. Why would you open IE!? It’s easier just to turn off Ad Blocker and reload.

            1. …did someone say “reload?”

  3. They hired Megyn Kelly?

  4. In November, President Barack Obama issued an executive order establishing a new Presidential Commission for the Study of Bioethical Issues.

    Among others in a long list of stupid executive orders.

  5. “By making democracy more deliberative, we stand a better chance of resolving some of our moral disagreements, and living with those that will inevitably persist, on terms that all can accept.”

    Why do I get the feeling the above is a huge waste of time, and that in the end, this commission will simply do the Executive’s bidding?

    Figuring out what’s moral or ethical is not so hard as to need a committee of millions.

    1. I would argue that the more people involved in making the decision the harder it would get.

      Of course if you pick the decision makers it might not be hard to determine what is moral at all.

    2. By making democracy more deliberative, we stand a better chance of resolving some of our moral disagreements, and living with those that will inevitably persist, on terms that all can accept creating more phony-baloney jobs on the taxpayer dime.”

  6. I went to Penn, and I can say that in all likelihood, nothing will actually happen at meetings of this bioethics committee, because Amy Gutmann is the MOST BORING speechifyer in the universe. I think most of that panel is going to be rendered clinically dead by her voice within the first five minutes of her first speech.

    1. Awesome. Can we have her address others in DC, too? Like the whole government? Dead is a bit much, but six-month comas would work. Just enough to toss them all out on the basis of incapacity.

      1. If incapacity allowed them to be tossed out, they would all already be gone.

        1. You know, it may be as simple as the fact that no one has tried that gambit.

        2. Just think though. If Kennedy had admitted that he was dead a few months sooner, the Democrats would still have 60 votes in the Senate.

      2. I could get on board with “dead”

  7. A Blond and blue eyed Chairman to a bioethics commission scares me a bit.

    Just saying.

  8. How does one see the “alt-text”?

    1. Relax your eyes.

      1. TickleStick likes this

      2. TickleStick likes this comment

    2. Hover your mouse cursor over the image.

      1. Open your mind to possibility.

      2. Hover your mouse cursor over the image.

        I did that but it made a mess on the screen.

  9. She is a good example of punching above your weight class. Among all women she is just okay. But among college Presidents, she is pretty damned hot.

  10. Essentially they are going to judge what is truly moral, correct? Well, given that President Obama appointed her, and she’ll have a hand in appointing others, I’d say that they will reach the conclusion that altruism is most moral. Perhaps intellectual property rights will stay, but tangible property rights might not.

  11. Amy Gutmann (born November 19, 1949, age 60) is the 8th President of the University of Pennsylvania and the Christopher H. Browne Distinguished Professor of Political Science, Communications, and Philosophy. She is a political theorist who taught at Princeton University from 1976 to 2004 and served as its Provost.

    First, what the hell is a “poitical theorist”?

    Political philosophy is the study of concepts such as liberty, justice, property, rights, law, and the enforcement of a legal code by authority: what they are, why (or even if) they are needed, what makes a government legitimate, what rights and freedoms it should protect and why, what form it should take and why, what the law is, and what duties citizens owe to a legitimate government, if any, and when it may be legitimately overthrown ? if ever.

    Ah – I see. Basically, a salesman for the State.

    1. “[I]f ever?” I mean, an American scholar said that? Should we call the UK and repudiate the Declaration?

    2. …what they are, why (or even if) they are needed…

      Yeah, hell, liberty, property rights – I question whether I need those things all the time.
      Guess the “political philosophers” missed the whole “self evident” thing.

      Thanks for continuing to show me people who scare the shit out of me, Reason! I won’t sleep for a week, bastards…

      1. Hey, don’t be so hard on Reason – I was the one that placed the Wiki information about this scary bitch.

      2. Yeah, hell, liberty, property rights – I question whether I need those things all the time.
        Guess the “political philosophers” missed the whole “self evident” thing.

        God damn it. Why do we always digress into animal spirits and moral imperatives.

        How fucking hard is to to say that nations of free poeple out compete nations of slaves. And if our nation does not want to get squashed then its people better fucking be free.

        “self evident” is pretty but it is still horse shit.

        1. Not a pure blood. If you are, bully for you.

  12. “legitimacy of a collective decision”

    No thanks.

    Clearly this woman succeeds by simply boring the living shit out of everyone until they give her what she wants.

    1. We’ve got a contrarian over here! Any debate over whether we need to “enforce some legal code” on this person? Nope – consensus again!

      Book ‘im, Danno…for not performing the duties owed to government…and anything else you can think of. Or make up.

      1. We can accuse him of being “obsolete.”

        [The Twilight Zone Ep (65) The Obsolete Man
        First Aired: 6/2/61
        In a future state, a librarian is judged obsolete by the Chancellor and sentenced to death.]

  13. Collective decision? Resistance is futile.

    Ask the folks in the UK if they like being told they can’t have life saving/extending medicine by NICE becuase it is not cost effective.

    1. I resemble that last remark.

  14. Goddamn it, one more:

    In Gutmann’s conception, deliberative democracy is an ongoing, transparent, society-wide discussion of fundamental values.

    WT fuck? WHAT? If that’s not the definition of “define the universe, and give an example”…

    OK, I gotta get off this site for awhile. Thanks for nothing, Ronald!

  15. the president empowers the commission to “identify and examine specific bioethical, legal, and social issues related to the potential impacts of advances in biomedical and behavioral research, healthcare delivery, or other areas of science and technology.”

    IOW, take a look at something “related to” science.

    One budget-cutting measure is readily apparent.

  16. In this comment stream: hopeless glibertarians emerge from their remote compounds, confuse democracy with collectivism, as well as intellectual qualifications with statism, then strain to deny that bioethics presents huge problems when big business patenting of life forms and intrusion into the human genome is already well underway.

    Thanks for checking in, but you can go back to sleep now.

    1. What are these “huge problems” you mention?

      If a business patents a life form they invented, how is that different from pantenting a metal motor you invented? Why is it only bad if a big company does it?

      Why do you call researching or changing genes in a human “intrusion”? If you’re talking about someone changing your genes without your permission, that’s already illegal (re: assault and battery) and scientists aren’t doing that.

      I’ll go back to sleep when you can satisfactorily answer these questions.

      1. Corporate intrusion into the human genome has already taken many forms, many pointing to mass-marketing applications that the society should absolutely have the chance to regulate or make outright illegal.

        Here is just one example: as we have seen in health insurance, the industry logs record profits each year despite the increase in costs for health care services and drugs. The high performance of these very lightly regulated companies is directly attributable to the extremes in risk management they undertake. They are allowed to deny coverage for any reason. They are allowed to rescind coverage based on any conception of a “pre-existing” condition. Etc.

        Genetic discrimination would be a wet dream for them. A patient’s genetic makeup is filled with additional potential justifications for recisssion: “future risk” may now be ascertained and actuarialized and coverage pricing and availability tailored accordingly.

        I realize a simplistic free-market fundamentalist would have no problem with this, but a population of patients who know all too well what an barely-regulated market in health insurance does (forces mass medical bankruptices while it makes providers record profits) would and should have a chance to know what is at stake and to stand up for their interests, which are absolutely not the same as the health insurance industry’s.

        This is only one potential market application of personalized genomic data against the backdrop of a completely wild-west, insufficient regulatory environment.

        1. The high performance of these very lightly regulated companies . . .

          Very lightly regulated? Your justification for this description is what?

          I realize a simplistic free-market fundamentalist would have no problem with this . . .

          Maybe if simplistic free-market fundamentalists thought this country had a free market in this area. I don’t. Of course, I could be wrong: if so, tell me why. As it stands I consider the warren of anti-competitive regulations and the myriad health industry lobbyists influencing congress–you know, where legislation is made–to be symptoms of an un-free market.

          1. Well, sure, the classic, huge libertarian mistake is to fail to admit the marketplace for political results exists. Lobbying and defunding the apparatus of state are absolutely perfect examples of a free market at work, allocating capital to get results.

            But in terms of regulation of net risk management in insurance, away from employer-provided insurance, the states have the bulk of the regulatory weight, and this only concerns the crappiest policies, protecting very few customers from discrimination. Most of this is in guaranteed-issue regulation, and only in some states.

            Federally, it’s even more of a joke regulation-wise. Nationally, the free market has meant hundreds of mergers in insurance, even though there is supposed to be antitrust regulation preventing this and fostering competition. Not even close. The DOJ under Bush saw 400 mergers in health insurance. How many cases did they bring under the antitrust exemption? 2. So much for the jackboot of gubmint interfering in the free market.

            http://articles.latimes.com/20…..tzik2?pg=2

            You may have noticed the modern effort to call off the very real non-stop ass rape of the public by health insurance companies. This would represent actual regulation on par with that found in the Netherlands or Switzerland, where private companies become a kind of utility. By comparison, what we have now is as free as that business gets anywhere in the world – except maybe Somalia. It’s pretty sane to not want the boardroom at Humana or anybody else accustomed to wielding such power and enjoying such favor to have the final say about what they do with our genomic data.

            1. The number of mergers is irrelevant to the level of monopoly without a corresponding account of the number of new insurance companies. Is the total net number of companies going up or down? Even if it is going down mergers are bad by nature, it’s only monopolistic practices that are bad. Bigger companies can provide services cheaper because of economies of scale–a consumer win! The anti-trust inspector’s job is to prevent the number of insurers in a given area from becoming too small, NOT to prevent as many mergers as possible.

              Somalia is anarchistic, NOT free market. Free markets require sane and uncorrupt police enforcement of contracts, and property rights.

              If you’re worried about insurance companies using your genomic data, you don’t have to give it to them. It’ll be annoying for you if you have to pay more to get insurance, but it’s not morally right to FORCE people to do business when you’re lying to say you have no potential health problems either.

              The only reason people are ever completely denied medical coverage is because of regulations on insurers that force them to cover certain illnesses and/or cap premiums. Then, when it’s impossible to draw up a legal insurance plan where the risk makes sense, people get denied coverage.

              1. Your wild misunderstandings of antitrust law and of the effects of mergers on competition are not only an affront to history, economics and common sense, they are making Theodore Roosevelt achieve rotational escape velocity in his grave.

                Your blaming of nonexistent overregulation for dropped coverage and recission is either base insanity, or a case of AHIP shilling. In either case you provide exactly zero support for your statements.

                Your shrugging of the shoulders concerning regulation of genomic data usage is exactly what a simplistic free-market fundamentalist does: give corporate interests a very deep and meaningful lap dance.

                Like I said, you guys should just go back to sleep.

        2. You mentioned “record profits” twice with the implication that this is bad. Of course inflation means that breaking even in real dollars will still be “record profits” most of the time, so I can’t directly say you’re ‘wrong’. But you need a sense of proportion–the health insurance industry has much lower margins than many other industries.

          If you’re going to imply that insurance companies are exploiting people to a greater degree than ever before you should say it by demonizing their practices rather than their successes on their balance sheets. Profits themselves are not bad–profit is always good–only the actions that produce the profits can be bad.

          I’d also like to point out that while the old west is famous for its anarchy, libertarians are not anarchists. “free market” is not the same as the “anarchic market” you seem to be picturing.

          When libertarians bitch about markets not being free, we’re talking about things like insurers not being allowed to sell insurance across state lines. There is no legitimate reason for this restriction. There are thousands of similar regulations across many areas of life that either don’t work, or don’t make sense, but no one in government seems genuinely interested in removing them.

          1. It does a health insurance lobbyist proud to see such astonishing apologia – and I suspect they didn’t even pay for it in this case.

            To hide behind inflation as a fig leaf explaining the health insurance industry actually ISN’T making record multibilliondollar profits – against a backdrop of rising drug costs, rising service costs and skyrocketing medical bankruptcies – I’m sorry, that is an indication someone could do anything to avoid facing simple reality in this discussion.

            I mean, I didn’t even bring up the profits of the HI companies in an isolated way. I brought them up in the context of rising costs for services and drugs as well as the skyrocketing number of medical bankruptcies. It is these factors taken together that practically scream for the US to catch up with the rest of the industrialized world, tune out the demented business propaganda we are uniquely inundated with, and finally remove the profit motives from basic health insurance. Which isn’t a bioethics discussion, really, but obviously we have to crawl before we can walk.

            It’s just astonishing. The middle class is evaporating before our eyes, and on their way to poverty, people’s big concern is that maybe we didn’t give a long and loving enough handjob to big business?

    2. Bioethics presents huge problems when bioethical decisions are left up to the democratic process.

  17. She basically wants to take the “mob rule” approach. End of story.

  18. wow. bad. My suggestions:

    (1) the scarcity of resources
    (a) free market takes care of this where it exists, by allocating the resources according to the economic contributions that a person has made to society.

    (2) limited generosity.
    (a) Forced generousity isn’t.
    Generosity is morally neutral at best, and imposing it via the government is akin to calling the victim of theft “generous”. beware “number and diversity of voices on a bioethics commission is not necessarily the most important factor in making deliberation work” translates to: “My people get to control yours”

    (3) incompatible moral values
    (a) I may think what you’re doing is wrong, but I have no right to stop you unless you’re doing it to me. That attitude is the only fair/just/equitable way to deal with this.

    (4) The incomplete understanding that characterizes almost all moral conflicts.
    (a) this would be true if everyone based their morals on their understanding and their reason, but they don’t. Many if not most people’s morals are based on gut-feelings, cultural norms and religion. I’m all in favor of getting more people to acquire knowledge, but let’s set our expectations at a reasonable level.

  19. I guess simply stating that “The Presidential Commission on Birth, Death, and the Meaning of Life” is unconstitutional and leaving it at that was just too much of a stretch for Mr. Bailey.

  20. patients … should have a chance to know what is at stake and to stand up for their interests

    Right on!

    glibertarians … confuse … intellectual qualifications with statism, then strain to deny that bioethics presents huge problems

    Not right on!

  21. Absolutely superb article. Thank you.

    This is a subject I’ve been trying to get at in the health care debates.
    Those honest progressives who are willing to admit that the government will have to engage in rationing generally argue that some sort of system can be put in place in which health care resources would be rationed according to some sort of set of bioethical principles superior to the results of the market.

    Yet, democracy is nowhere near as perfect a system as these people suppose it is. It almost invariable IS “interest group bargaining”, rather than some calm “deliberative” process, as the partisan warfare makes amply clear. Experience give us no reason to believe that centralized government rationing of health care resources would even approximate a bioethicists idea of “distributive justice”. And the more consequences depend upon a single binary choice every four years, the more brutal the partisan warfare will become.

  22. Oh, and I should add that the Democratic congress made it instantly clear that no bioethically-designed rationing system would emerge from this government when they overrode their own bioethical panel and mandated free mammograms in every health plan. Because it made breast-cancer activists happy.

  23. Speaking as someone related to a bioethicist: Bioethics is about smarter-than-you people deciding what is best for you. What could possibly go wrong?

  24. The ‘collective’ seems to be Obama’s way or the highway. Interesting that you would think this is a good idea, considering his record so far on ‘discussing’ the issues.

  25. The Tea Party needs you now to organize. We want our Constitution to be “Protected” and not destroyed:

    http://www.nationalprecinctalliance.org/main/getting_started

  26. Bioethical Issues. Well its seems quite interesting. Hope this commission will bring some positive results for Americans. Hope not to fly over night.

  27. Bioethical Issues. Well its seems quite interesting. Hope this commission will bring some positive results for Americans. Hope not to fly over night.

  28. My only point is that if you take the Bible straight, as I’m sure many of Reasons readers do, you will see a lot of the Old Testament stuff as absolutely insane. Even some cursory knowledge of Hebrew and doing some mathematics and logic will tell you that you really won’t get the full deal by just doing regular skill english reading for those books. In other words, there’s more to the books of the Bible than most will ever grasp. I’m not concerned that Mr. Crumb will go to hell or anything crazy like that! It’s just that he, like many types of religionists, seems to take it literally, take it straight…the Bible’s books were not written by straight laced divinity students in 3 piece suits who white wash religious beliefs as if God made them with clothes on…the Bible’s books were written by people with very different mindsets…in order to really get the Books of the Bible, you have to cultivate such a mindset, it’s literally a labyrinth, that’s no joke.

  29. Ugg boots (sometimes called uggs or ug boots) have been considered a fashion trend since the early 2000s.The combination of its soft shank and sheepskin interior means that ugg boots are designed for casual, short-term use, and not for situations which require sturdy, protective footwear, as the design emphasis is on style and comfort rather than protecting the feet. While in the boot, the sockless foot is in full contact with the sheepskin lining, thereby maximizing the insulative properties of the boot.

  30. “By making democracy more deliberative, we stand a better chance of resolving some of our moral disagreements, and living with those that will inevitably persist, on terms that all can accept.”

    Is stuff like this that hampers the economic growth – nothing will get sorted as nobody will agree.

  31. Given the extreme differences in values in our current political system, this job would seem to be all but impossible credit repair

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