Bioethicists Can't Handle the Truth

But research shows that normal people can.

“A final lesson from the history of bioethics is the consensus that if you can't offer a patient anything to prevent or to ameliorate a terrible disease, why test for it?,” writes University of Alabama at Birmingham bioethicist Greg Pence in a heartfelt op/ed in the Birmingham News. Pence is specifically concerned about burgeoning availability of tests for the brain- and personality-destroying horror that is Alzheimer’s disease.

Just last week, an expert panel at the Food and Drug Administration recommended that the agency approve a new test developed by Avid Radiopharmaceuticals that can detect the presence in the brain of plaques of the amyloid protein associated with Alzheimer’s disease. The test uses a radioactive dye that attaches to amyloid plaques. That dye can then be detected with positron emission tomography (PET) scans.

Other researchers are developing a test that measures amyloid and other protein levels in spinal fluid. They recently reported that the test found the protein signature for Alzheimer’s disease in 90 percent of the patients who had already been diagnosed with the disease. In addition, the test found the disease signature in 72 percent of those who have mild cognitive impairment, and in 36 percent of patients who were cognitively normal. Withdrawing spinal fluid is tricky, so researchers at the University of California, San Francisco, are working on a blood test to predict which patients are likely to suffer from Alzheimer’s disease.

Most interestingly in the spinal fluid study, many of the cognitively normal subjects with the Alzheimer’s disease signature carry a version of the apolipoprotein E (APOE4) gene. People with one copy of the APOE4 gene have a three times greater-than-average risk of suffering from the disease. Two copies of the gene confer a 12 times greater than average risk. The researchers noted, “The unexpected presence of the [Alzheimer's disease] signature in more than one-third of cognitively normal subjects suggests that [Alzheimer's disease] pathology is active and detectable earlier than has heretofore been envisioned.” In other words, the test can identify people years in advance who are likely to eventually suffer from the disease.

Several direct-to-consumer gene testing companies now include an APOE gene test. People with the rare APOE2 version seem to be protected against the disease while those with the APOE3 version have an average risk of coming down with it. The lifetime risk of Alzheimer’s disease among those who reach the age of 65 is approximately one in five for women and one in 10 among men. Clearly, the direct-to-consumer gene testing companies are ignoring Pence’s bioethical “consensus” about offering tests for incurable diseases.

Why are so many bioethicists against such testing? Chiefly, they fear that bad news will provoke anxiety in people whose lives would be forever deformed by dread of impending mental doom. But is that so? A 2009 study found that subjects who were told their APOE gene status did not suffer any greater levels of anxiety than people who did not know what version of the APOE gene they carry. “The disclosure of APOE genotyping results to adult children of patients with Alzheimer's disease did not result in significant short-term psychological risks,” researchers concluded.

This result has now been bolstered by another study published online on January 12, 2011 in the New England Journal of Medicine. Eric Topol, a professor of translational genomics and his colleagues at the Scripps Translational Science Institute in La Jolla, California, recruited 3,600 people to take a genotype screening test from Navigenics. The test looks for gene variants that affect risks for 23 different diseases including breast cancer, colon cancer, heart attack, diabetes, and the APOE gene variants. The researchers then monitored the participants to find out if the genetic risk information increased their anxiety or encouraged them to change their health habits. The researchers reported, “We found no short-term changes in psychological health, diet and exercise behavior, or use of screening tests.” The test results triggered no dark existential anxieties; people basically just carried on with their lives.

We’ve experienced this kind of bioethical condescension before. In 1998, a panel of eminent bioethicists convened at Stanford University advised that most women should not take the new test for the BRCA-1 and BRCA-2 breast cancer genes. As Boston University bioethicist George Annas familiarly explained, "Since there is no way to prevent this disease, what good is knowing you will probably get it in the future?" In addition, the bioethicists worried, “Women who undergo genetic testing may face psychological problems in adjusting to the results, whether positive or negative.” Poor dears, they will just be driven to distraction by the newfangled test results. But once again, bioethical fears about the psychological fragility of consumers turned out to be just wrong. A 2008 study found that women four years after taking the BRCA test had suffered no adverse psychological consequences from it.

The National Cancer Institute estimates lifetime risk for breast cancer in women with BRCA-1 or BRCA-2 mutations at about 60 percent and estimates their ovarian cancer risk ranges from 15 percent to 40 percent. Keep in mind that the average lifetime risk for breast cancer is about 12 percent. Fifteen years later, the American Civil Liberties Union (ACLU) is asserting that not only should access to BRCA testing not be restricted, but that it is a woman’s right to get tested. “Individual patients' rights are violated because gene patents impede access to medical information and care,” argues the ACLU in its lawsuit against the Myriad Genetics, the company that has the patent rights to the test. What was once restricted has become a right. In a few more years, the same will become true for Alzheimer’s disease testing too.

There are lots of different answers to Pence’s question, why test for incurable diseases like Alzheimer’s disease? Now that the tests are becoming available, researchers can identify people who are at higher risk of falling ill earlier, and enroll them in studies to uncover how the disease progresses. This will also allow scientists to enroll subjects in clinical trials earlier for new drugs aimed at preventing the disease.

Testing is not just about therapy. People can also use the information to help plan their futures. Perhaps they will drop out of the corporate grind and become Caribbean sailing captains. Or they will arrange their affairs so that they can receive good care when they do fall ill. Of course, some people really may not want to know. In which case, they are perfectly free to not take the tests. The only people who seem especially overwrought and unable to handle the results of genetic testing are bioethicists.

Disclosure: According to my results from Pathway Genomics, I am homozygous for APOE3 which suggests that my risks for coming down with Alzheimer’s disease is average, at least with respect to this risk factor. For more details on genetic testing and why concerns over genetic privacy are exaggerated see my article, “I’ll Show You My Genome. Will You Show Me Yours?

Ronald Bailey is Reason's science correspondent and author of Liberation Biology: The Scientific and Moral Case for the Biotech Revolution (Prometheus Books).

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  • CatoTheElder||

    "if you can't offer a patient anything to prevent or to ameliorate a terrible disease, why test for it?"

    Is bioethicist Greg Pence so stupid that he cannot understand that rational people may find such information useful for life decisions other than prevention or amelioration of disease?

  • CatoTheElder||

    Stupid isn't the right word ... perhaps narrowminded.

  • ||

    Patronizing comes to mind.

  • George V||

    Douchebag comes to mind.

  • Old Salt||

    In my experience, it seems that ANY kind of asshole who calls themselves an "ethicist", whether it be bio or business or what have you, is a text book definition of nanny-stater!

    Ethicists: "We're the ones who knows what is best for you because it's in our job description!"

    I mean, seriously? We have an entire profession of people who are actually PAID CASH MONEY to sit around and act like the fucking hall monitors who we used to give swirlies to in the Special Ed kids bathroom after lunch on Burrito Tuesdays!

    I used to laugh whenever my college professors would get around to the inevitable ethics discussion in my business and economics classes; any shit stain who NEEDS to be told about ethics is the EXACT kind of person who WILL end up in jail and/or politics!

    I think that the only reason a person becomes an "ethicist" is the same reason that too many jack-offs end up as college professors: They couldn't handle having a job in the real world and knew that sooner or later the more skilled people in their profession would stuff them into their employee locker just to impress that red head intern that everyone has been trying to fuck!

  • ||

    Bingo.

    Anyone who expropriates a term, be it "progressive" or "ethicist" should be viewed with a health skepticism.

  • Realist||

    Yes to all the above. It is always good to know what your affliction is so you can rule out what it ain't!

  • ||

    Pence is also oblivious to the concept of individual rights. MDs have a long history of paternalism, and are due for a well-deserved comeuppance.

  • ||

    rational people may find such information useful for life decisions other than prevention or amelioration of disease?

    Oh, you mean like, i dunno, getting the proper examinations to catch it early when it is actually (possibly) treatable?

    Do bioethicists actually have a medical degree? If not, why does anyone listen to them again? If so, how do we go about revoking that asshole's license for recommending against every possible tool that can help someone survive cancer?

  • JD||

    Most of the medical ethicists I've met are philosophy PhDs, not MDs.

  • Law Student||

    I've had two classes with bio-ethicists in the past and they both had MDs and PhDs in philosophy (one also had a JD). I could never imagine either of them thinking that testing for breast cancer genes would be a bad idea.

  • ||

    They wouldn't. However, the use of such any test to diagnose a condition for which there is no current cure, would need to be carefully managed, with proper communication about future choices. MDs are not often good at this type of communication, and as a rule, are not trained for it, either.

  • DLM||

    Oh, you mean like, i dunno, getting the proper examinations to catch it early when it is actually (possibly) treatable?

    It may also be treatable in the future, though perhaps not at the moment.

  • paloma||

    Besides the fact that you may be able to prevent, ameliorate, or even cure it in the future?
    Is Greg Pence so stupid that he thinks that just because nobody that HE knows can do anything to prevent or cure a terrible disease, that means nobody in the world EVER will?

  • prolefeed||

    As Boston University bioethicist George Annas explained, "Since there is no way to prevent this disease, what good is knowing you will probably get it in the future?"

    So you can, you know, PLAN for what will happen next?

    "Gee, it turns out that everyone will eventually die, and we can't stop that, so let's just tell the kiddies that they will live forever so they won't worry about it?"

    OR:

    "It turns out that at a certain age women have changes happen to their bodies that prevent them from having any more kids, and we can't prevent that, so let's keep this change a big secret from women so it's a big surprise for them. Won't they be happy not knowing this is about to happen?"

    Fucking idiots.

  • ||

    If I could afford it, I would be glad to know of the potentials for various diseases, so I would have contingency plans set for it.

    I also think my children would find such information of interest and use in their lives. They are aware of several traits they have inherited and I expect that as highly intelligent kids they would welcome knowing the potentials, and perhaps getting tested.

    But my fear would be that the information could get to the insurance companies, especially the hostile government, and I, and them too, would be penalized for my "defects", in advance on just the probabilities.

    I am not sure that would be fair to them, penalizing on what "might be".

  • ||

    Why are so many bioethicists against such testing? Chiefly, they fear that bad news will provoke anxiety in people whose lives would be forever deformed by dread of impending mental doom.

    OK, only if you are like super duper smart can you read whats next - because it might fill you with dread.
    No, not you, definitely not you..not smart enough
    OK
    Here it is:
    Your all gonna die.

  • tea partier||

    Just like bureaucrats invent all sorts of dumbass reasons to justify their existence, this dude gotta do the same, call yourself a bioethicist and you had damn well better find yourself some ethics issues to harp about, None handy? Then make one up!

  • fructose||

    Bioethicists are such turds. What makes these shitheads uniquely qualified to make ethical decisions for the rest of us? Are they especially moral?

    For that matter, can I just declare myself a bioethicist and get Congress to ask my opinion about this stuff? Since Bailey talks about these issues from an ethical standpoint, does that make him a bioethicist?

  • Binky||

    I'm a bioethicist and a financial adviser.

  • .||

    Are they especially moral?

    They're paid to think about such things and are entitled to their opinions.

    Can I just declare myself a bioethicist and get Congress to ask my opinion about this stuff?

    You can try. I doubt anyone would pay attention to you.

    Since Bailey talks about these issues from an ethical standpoint, does that make him a bioethicist?

    It makes him a science writer.

  • Night Elf Mohawk||

    They're paid to think about such things and are entitled to their opinions.

    Whose opinion should count more, the bioethicist's or the woman's who wants the test?

  • Terence Lee, M.D.||

    They're paid to think about such things and are entitled to their opinions.

    Who pays them? Do I have to pay them to do my bioethicizing for me, or can I just do it myself in my garage and apply the savings towards improving the lives of my family?

  • ||

    can I just do it myself in my garage and apply the savings towards improving the lives of my family?

    If you like going to jail for violating interstate bioethecism statutes, sure.

  • paloma||

    +1

  • .||

    Bailey cited one bioethicist's opinion. One. Nowhere in the article does it mention any kind of legal prerogative to block anyone's test results. The bioethicist is not your doctor. He cannot keep your test results from you. Relax.

  • ||

    "." always knows your best interests, and for any commentator to question that should be a felony, prosecutable with death.

  • .||

    Don't comment in a public forum if you don't want to be challenged.

  • paloma||

    Nor can my doctor keep my test results from me. Nor should she.

  • Rather||

    ., methinks you are a little too defensive

  • ||

    methinks you should get back to your blog, and stop feeding the trolls.

  • .||

    You fit the definition of a troll. Just sayin'.

  • ||

    Ummm, wow, color me surprised.

  • cynical||

    "bioethicist" is just a way to say "Puritan" in a way that sounds more scientific than religious (although it probably isn't).

  • ||

    I actually think we're dissin' Puritans at this point. Even those buckled-up, snatch-zipping, no-dancing, undrinkinest peeps weren't as bad as the asses we have to deal with today.

  • American Beauty||

    Perhaps they will drop out of the corporate grind and become Caribbean sailing captains. Or they will arrange their affairs so that they can receive good care when they do fall ill.

    Just more signs of psychological damage.

    /sarcasm-for-those-who-need-it

  • Rather||

    I wouldn't want to know. Speaking of planning for the future, if the ship goes down Gilligan style who is going to take over?

  • ||

    I don't know, but I call dibs on Mary Ann.

  • ||

    Mrs. Howell.

    (you KNOW she's just hurtin for a good fuck)

  • Rather||

    The professor definitely and I'd make him wear his glasses

  • ||

    People always say Mary Ann - F*uck Mary Ann!....hmmm, well not that way.
    C'mon, tell the TRUTH, Ginger was much, much Hotter. Plus she could roll a cigarette with her tongue and light it.

  • Tim||

    At least if I get Alzheimer's I'll still fit in posting on the internet.

  • .||

    +2.67

  • Rather||

    You're wrong Tim, you'd be elevated to columnist, or senior editor

  • George V||

    HuffPo

  • Tony||

    Exactly. The libertarians swear they criticized Bush for his fiscal recklessness, but I seem to have no memory of that, or that I set up the same straw men every other thread.

  • George V||

    Sorry to heaabout that memory loss.

  • ||

    Am I the only crude fucker that thought that some women may want to get rid of their breasts before they can get the disease?

  • Pip||

    I've read of women doing just that.

  • Ice Nine||

    There's nothing crude about it. It is done and it is a good reason to have the test. What George Annas said is bullshit.

    It's pretty easy - no breasts, no breast cancer. Take your pick: silicon or in the grave at 40. Can you say "no-brainer"?

  • ||

    "your balls, or in the grave at 40"

    I'd pick the no-balls option too.

  • ||

    From your DNA's point of view, that is the wrong choice.

    (I forget who said "A human being is just a bunch of chromosomes' way of making more chromosomes."

  • Lazarus Long||

    "A zygote is a gamete's way of making more gametes. This may be the purpose of the universe."

  • ||

    If that's the purpose of the universe, then I'm willing to end the whole experiment right now.

    Vote For Universal Eradication of Life. (Else you hate Teh childrens)

  • ||

    A zygote is a gamete's way of making more gametes. This may be the purpose of the zygote.

    FTFY. fucking moron.

  • cynical||

    So knock someone up a couple of times as early as possible, toss some jizz in the freezer for spares, then ditch the balls. Definitely more thorough than a vasectomy at any rate.

  • JD||

    "your balls, or in the grave at 40"

    Castration used to be an option for treatment of advanced prostate cancer, and apparently worked pretty well. Prostate cancer growth is androgen-dependent, and removing the source of testosterone stops it in its tracks. That's now done with drugs rather than surgery.

  • DDavis||

    “A final lesson from the history of bioethics is the consensus that if you can't offer a patient anything to prevent or to ameliorate a terrible disease, why test for it?”

    This is why I hate the medical establishment with a white hot fury.

    Our betters will decide for us what we are allowed to know, and enforce ignorance about our own bodies through the power of the state.

    We can't decide what we put in our own bodies, what medicines and treatments we want, what providers we want, and what information about ourselves that we want.

    All the hoopla over Obama nationalizing health care is comic - Obamacare eliminates 99% of your health care freedom, instead of the 98% already eliminated by government. Whoop di do.

  • Dr. Welby||

    Calm down. You'll get a rash.

  • ||

    We can't decide what we put in our own bodies, what medicines and treatments we want, what providers we want, and what information about ourselves that we want.

    Frankly, it's amazing we still have a choice on wheter to live or not....or wait, suicide is illegal isn't it. Oh well, they can sue my autoeroticallyasphyxiated corpse.

  • JD||

    Don't read the editorials in the New England Journal of Medicine if you care about your blood pressure. I read it to keep current on medical research, but the rampant statism of the editorial board is astounding.

  • Wind Rider||

    What a bunch of pompous "I'm credentialed and you're not even though I'm a fucking asinine idiot" dickheads.

    Guess what jerks - not your fucking call, and claiming that your lack of a fucking imagination is a piss poor excuse.

    It is up to the actual human being involved, you know, the one that the attending physician has an obligation to be straightforward and honest with, to be apprised and aware of ALL pertinent and relevant information about themselves available.

    Which, if you'll note has no reference to otherwise worthless dumbass hangers-on who have no skill other than quibbling and head scratching over various made up hypothetical bullshit. So go learn to do something useful to mankind, like run a french fry machine, which probably would challenge your limited mental skillset in very interesting and amusing ways.

  • ||

    Whenever I see the term "bioethicist", I wonder, what are their particular ethical underpinnings? Are they act utilitarians? Rule utilitarians? Categorical imperative? Some kind of egoist? Life-affirmation like Schweitzer? Ethical Skeptic?

    But when I read their articles, I conclude that that whole exercise is pointless as most of them seem to be fucking morons. As a philosopher, the concept of willful ignorance never occurred to me.

  • ||

    As a philosopher, the concept of willful ignorance never occurred to me.

    You suck at philosophy then. The preponderance of people who have no desire to engage in that contemplation of these issue should be obvious to anyone who has chosen the thinking path.

  • DDavis||

    Bioethicists: medical priesthood that sanctifies the decisions government and health care institutions make about our bodies.

  • Horace ("B4") Descartes ||

    As a philosopher, the concept of willful ignorance never occurred to me.

    I ignore, therefore I am.

  • ||

    [I think, therefore, I am]

    "Descartes started on this basis. But he built an artificial structure by presuming that man knows nothing, and doubts all, whether outside himself or within. And in order to end doubt, he fell back on the fact of consciousness: I think. Surely, however, that is the stupidest primary assumption in all philosophy!"

    Albert Schweitzer

  • ||

    How is it a "stupid primary assumption?" If you did not exist you could not be conscious.

  • ||

    The real question becomes: Is Albert Schweitzer actually a conscious human being?

    Dead people can vote easy enough, I don't see why they can't philosophize too. And shit, Jefferson keeps getting new quotes attributed to him even though he's been dead for 200years....and lets not even get started on Tupac.

  • Wind Rider||

    Don't start on Tupac - probably a gateway to Tulpa, and that can't turn out well.

  • cynical||

    The assumption was consciousness.

  • ||

    Again, how is that an assumption. The mere act of thinking is objective proof of consciousness. If you were not conscious you would not perceive thoughts.

  • cynical||

    I never said it was a good argument.

  • Monty||

    Kind of like disproving Human Action by taking action.

  • cynical||

    Aging: Incurable and invariably fatal condition. Let's fire all the fucking doctors, starting with bioethicists.

  • ||

    The field of bioethics is filled with persons of no great intellect who pretend to be doing something of importance. In my (thankfully limited) experience with them, they contributed little except mindless obstructionism to new medical trials and new medical technologies. Bioethicists and medical ethicists exist primarily because their participation is mandated in federally funded clinical trials.

  • JD||

    They also sit on the ethics committees of many hospitals and review cases brought before the board, so in some cases they basically have the power of life and death.

  • Doktor Kapitalism||

    I get the impression that bioethicists generally exist to tell us to ignore our common sense.

  • ||

    I refused to take a bio-ethics class in college. There is no such thing as bio-ethics in my opinion.

  • ||

    Well, to be tautological about it, only living things can have ethics, so all ethics is "bio-ethics".

    You can frame certain issues within the biological sciences ethically, so "bio-ethics" can be seen as the application of ethics to those issues. However, those debates can only arise within the context of larger ethical issues, so the 'bio' qualifier is moot.

  • HAL9000||

    This conversation can serve no purpose any more. Goodbye.

  • ||

    My point is that there is no ethics that depends on or is specific to biology. If something is ethical outside of biology, it is ethical inside biology.

  • cynical||

    Not true. Bio-ethics is a system of ethics based on extensive study of the game Bioshock. It's basically Reform Objectivism.

  • ||

    "Reform Objectivism" pretty much describes the Libertarian Party.

  • Doktor Kapitalism||

    I'm not entirely sure Objectivism can be reformist.

  • cynical||

    Well no, not Orthodox Objectivism. But Reform Objectivism can.

  • NeonCat||

    If you are a Reform Objectivist, does that mean you can eat a hot dog from the government?

  • ||

    I refused to take a bio-ethics class in college. There is no such thing as bio-ethics in my opinion.

  • ||

    FYI, i'm going to drink some tequila now, then torture some ants with a laser. Ethicize that.

    (No, I'm not, but come up with a reason I shouldn't, please.)

  • ||

    "Ethicize that."

    I think you mean "ethanolicize that". :)

  • Ant Revolutionary||

    Because if you did, then you'd be the first against the wall.

  • ||

    I promise no resistance when our ant overlords take control.

  • ||

    (and accept my death as a collaborator)

  • ||

    WHAT IS THE PURPOSE OF THE UNIVERSE?

    .....

    Only retarded fucking human beings would assume there needs to be a "purpose" to the activity.

  • ||

    (non-philosophers-need-not-apply)

    (No IRISH)

  • ||

    The "purpose" of the universe is to exist.

  • Ghost of Dirac||

    Don't ever tell people that PET scans use antimatter! It'll make their heads explode!

  • DK||

    Clever handle.

  • DLM||

    How would this affect the ability to get insurance and at what rates, if you are determined to be likely to contract an incurable disease in the future?

  • ||

    It wouldn't affect it at all as long as your insurer doesn't know about it.

  • ||

    Genetic testing is all about discovering the probability of a person having a "pre-existing" condition (albeit latent), information any health insurer would insist on knowing. If you withhold the results from your insurer and then develop the disease, they will state that you lied about said "pre-existing" condition and declare your policy to be void. Only a dupe would think they won't find out eventually.

  • ||

    Read what you just wrote. How can an insurance company say that you lied about having a pre-existing condition if the condition developed after you got insurance?

  • ||

    Simple. From their point of view, you didn't develop the condition after you obtained coverage, you merely developed the symptoms. As an example of this logic, HIV infection is a condition, while AIDS is a symptom of this condition which develops after the infection. If you have HIV but haven't yet developed AIDS and you try to obtain coverage without informing your insurer of your status, they can later void your policy. It's the same principle.

    Insurers are always looking for any loophole they can use to get out of paying up; it's called maximizing profits.

  • ||

    I'm surprised how many people posting about this article are operating under the delusion that the results of any genetic testing will be private. Health insurers, with the collusion of government, have made sure that is not the case.

  • DK||

    I've never understood all the concern about how insurance companies will react to genetic testing results. People seem to focus on the fact that rates will increase for those who test positive for a given genetic susceptibility. True - but they should also decrease when the same person tests negative for another susceptibility.

    If insurance markets were free, we'd very soon see a system in which companies offer coverage for individual diseases. Rational expectations would allow people to load up on insurance for conditions they're likely to suffer from and drop insurance on things they have no chance of succumbing to. I guarantee that a company using such a business model would quickly rise to prominence.

  • ||

    "People seem to focus on the fact that rates will increase for those who test positive for a given genetic susceptibility."

    Increased rates? Your insurance company would have you out of the system so fast you'd bounce on the sidewalk twice.

  • El Duderino||

    I have the feeling that if someone is going in to buy a test to see if they may be at risk for a disease, they have already come to terms with the possibility and are psychologically prepared for the results.

    Bottom line, scientists think normal people are too dumb to deal with the probability of serious future illness.

  • Lucky||

    A New Democrat MP has recruited American documentary filmmaker Michael Moore in her fight against a foreign mining giant in the northern Manitoba city of Thompson.

    Niki Ashton asked Moore to help spread the message about job losses in her hometown after Vale, a Brazilian company, announced the closure of a local smelter and refinery previously owned by Inco.

    Read more: http://www.cbc.ca/canada/manit.....z1ClBsg052

  • Metazoan||

    Yeah, the idea that there is a universal notion of not wanting to know about untreatable conditions is ridiculous. Even if it weren't, why not let each person decide?

    That said, epigenomics, transcriptomics, and proteomics are rapidly demonstrating that the genome sequence is not solely responsible for many traits, and that many of these non-genomics factors are in fact heritable (methylation patterns, chromatin structure, for example).

    But that's the science. Each individual should take it as he/she wishes.

  • ||

    The bioethicist is not your doctor. He cannot keep your test results from you. Relax.

    No, but he can (and will) sit on or advise a government panel that will be charged with "improving health care efficiency" or somesuch, and which will have the power to come between you and your test.

    The mere act of thinking is objective proof of consciousness.

    Your awareness of your internal mental processes is about the subjective thing I can imagine.

  • Monty||

    Death Panels?

  • ||

    "Your awareness of your internal mental processes is about the subjective thing I can imagine."

    This is a common fallacy. What you perceive is what is subjective. Whether or not you are perceiving (regardless of what you are perceiving) is not subjective. It's basically tautological. If you are conscious than you are conscious.

  • ||

    I was quibbling with the "objective" proof bit.

    If it happens entirely in your head (and it does, both the thinking and the awareness of it), then it ain't "objective" proof of anything.

  • ||

    Yes, it literally is, because it's tautological. The only thing that needs to be satisfied in order to objectively prove that you are conscious is that your brain is conscious of something. If you were not conscious, your brain could not be conscious of anything. Therefore you must be conscious.

  • The Zim||

    Look, let's not take this out of hand. All this is is some bioethicists (one in particular cited here) saying that if a disease isn't curable, it may be unethical to give a test. It is healthy to have a debate on this subject, and we shouldn't be criticizing this guy for sharing his side of the argument. I understand his perspective, but I personally would feel comfort at knowing that it's coming instead of one day being shocked to find myself losing my mind. And, of course, there are the cited studies above.

  • ||

    Yes, but the ultimate end of this is a law that bans people from investigating their own genome. For their own good, you know.

  • El Duderino||

    Why is this even a question of bioethics? I mean what people decide to do with their own lives is of their own concern. If someone wants to know if they might get a disease, even one that does not have a cure, then I fail to see how providing a test for this disease causes an ethical concern.

    The notion that someone might not take the news well is not an ethical concern because people deal with this very issue every single day of their lives from the moment they learn that they are not immortal. There is no cure for death, yet most people seem to be doing just fine with this knowledge.

    What a person may or may not be thinking after taking a test is entirely within their control. If they do not know if they are going to die from an incurable disease because they are not sure they can take the news, then they do not have to take the test.

    Nobody can control what other people think. The rational for not providing the test could easily be applied to the argument for allowing the test. How many people are worried that they might have some disease because their parents, siblings or neighbors have it. Or maybe they think they have symptoms of the disease, why not let them take a test to ALLEVIATE any stresses they may have.

  • ||

    Posted directly to the original article:

    There are more things in heaven and earth, Horatio, than are dreamt of in your philosophy.

    The pharma industry does not have a monopoly on experimentation and scientific progress. Individuals armed with the knowledge you argue against them having may take actions unknown, including some that may lead to positive results and eventual treatment.

    If millions of people who test positive for two copies of APOE4 decide to exercise, or eat loads of beets, or work crossword puzzles all day, or any one of limitless other possible reactions to the news, and if one previously untried therapies works, then many more millions of people may be spared suffering.

    Spreading knowledge, if we have faith in other human beings, results in benefits not yet imagined. Cloistering such knowledge leaves us only with the tiny world inside our own minds.

  • ||

    How did we get from *one* bioethecist and *one* panel at Stanford to "so many bioethists" disliking tests, with the implication of *all* of them disliking tests?
    This smacks of the writer either axe-grinding or trend-inventing.

  • ||

    I am a PhD ethicist currently working in a large, Mid-Atlantic academic health care center. The author and the ignorant seem to think that ethicists make decisions for others (patients, families, doctors, nurses, etc.) - they patently do not. A majority of the above criticisms of so-called "ethicists" should really be directed at those who are sanctamonious "moralists," i.e., right-wing talkshow hosts, politicians (Frist, comes to mind), religious fundamentalists, people dubiously claiming to be ethicists, etc. I am a practicing ethicist and teacher, and my employment is guaranteed for life!

  • ||

    Certain ethicists do make decisions for others, because they advise the government on what to ban.

  • El Duderino||

    Thats nice Fred, but have you ever considered what effect your decisions have on policy makers?

    This isn't really about bioethics, its about political policy. Just because someone who carries the title of "ethicist" believes it is wrong to provide certain tests to certain people doesn't necessarily make it right to BAN the sale of those tests. Politicians on both sides will take anything anyone who has just a hint of authority and use it do justify passing laws that suit their own political agenda, which more often than not has a lot to do with their associations with different lobbies.

    And by the way, I wouldn't go around getting your panties in a bunch about right wing moralist TV talk show hosts. What the hell do you think Ethics is all about. Ethics is based off of a set of MORAL values and while it takes on the look and feel of real science, it is in reality no different than what those "moralists" do, which is considering a situation through the prism of their own moral world view and then telling everyone else about it. The only difference between you and those right wing "moralists" is that the government actually listens to you and everybody who has to live with the new government rules has to live under your own sense of morality.

    Ask yourself this one question Fred, the work you do all day at the health center, what happens to it when its done? Does it all just go into a nice little academic folder to be filed away into a bottomless void? How is your work used? Don't you think people are looking through your work just to find something to support their cause?

  • AAA ||

    re: BRCA1 and 2 --the best reason to get tested would be the concern of ovarian cancer. While it is possible to detect breast cancer at an early enough stage that you can treat it (especially if you get regular breast MRIs rather than mammograms; this is what women who test positive for BRCA1 and 2 are usually able to do), ovarian cancer is usually not detected until it is too late; there aren't very good screens for early detection. A woman who has BRCA1 or 2 may want to have her ovaries removed after she is done having children; the surgery is not as disfiguring as a double mastectomy and she can virtually eliminate her chance of ovarian cancer. The typical route for testing is to see a genetic counselor who specializes in cancer genetics and can take your family history,then explain the test and all of your options, which can help you decide whether you want to take the test or not. It's not the right decision for everyone.

  • birtweiser||

    ooph. the sheer vehemence with which nearly everybody in this "comments" section agrees with Mr. Bailey is mindboggling. perhaps ironically, such vehemence, in my admittedly limited experience, is almost universally symptomatic of un-reason-able-ness. alas!

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