I Solve Yet Another Bioethics Conundrum for Free

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Bioethics ain't that hard

GenomeWeb is reporting that the National Human Genome Research Institute has handed out nearly $6 million grants to various bioethicists to figure out what the moral thing to do is in the following situation: 

The core questions in this area concern whether scientists should provide [research] participants information about their risks for diseases or conditions that were discovered while their genomes were being analyzed for research purposes….

There is a split in the research community about whether or not it is ethical to return results to participants, according to NHGRI, with some believing that there is an obligation to reveal to participants genomic information if it is medically significant and interventions could be taken to prevent a disorder. But others view such sharing as unethical, particularly if participants were told that they would not be contacted, if the information relates to a disorder that has no interventions, or if there are questions about the significance of the information.

Yes, participants should be told about any health risks uncovered by genomics researchers unless they
agreed otherwise. For example, I have signed up for the Personal Genome Project which explicitly tells me in the consent form [PDF] to which I agreed: 

Any information, data, analyses or other materials created or prepared by the PGP from such tissue samples or specimens, including, without limitation, your DNA sequence data, cell lines and the results of any research or analysis performed by or in collaboration with the PGP, are the property of and owned by the PGP and not by you. However, consistent with the goals of the PGP and this consent form, the PGP will attempt to make this information, data or materials, including your DNA sequence data, cell lines and other related analyses and materials, freely available to you and/or to the public as described in this consent form. Ultimately, however, it will be the PGP's decision – consistent with the requirements imposed by this consent form, Harvard Medical School and applicable law – when and whether to make available such information, data and materials. The PGP is unable to guarantee if, when or in what form you will receive access to any information, data or materials as part of your participation in this study.

I stand ready to resolve the next bioethical issue at a cost of considerably less than $6 million. Just ask me. 

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  1. Moral Conundrum help, 5 cents

    The Bioethicist is IN

  2. Something like 90% of bioethics wouldn’t even exist without the seemingly automatic and unconscious disregarding of the patient’s wishes.

    1. RCD: Very nicely expressed.

    2. Look, people are too uneducated or too dumb to make proper choices. Why, tell them about something that could affect their life and they’re liable to run around naked, humping and killing things. Society must be protected, as well as what less enlightened people would refer to as morons.

    3. the seemingly automatic and unconscious disregarding of the patient’s wishes.

      Perhaps this is their purpose? To take away the choices of health care consumers?

      and it is the remaining 10% who are confused…

  3. What part of “informed consent” is giving them trouble?

    1. The part that doesn’t give them the last word.

  4. I’ll solve the next one for negative $1.

    How’s that for competition…

  5. I, for one, would not put much weight into the ethical determination of someone who does not see the complete lack of ethics in charging some fraction of $6 million to answer a yes/no question.

  6. Does there exist even one “bioethicist” who isn’t a creepy control freak trying to restrict what others can do with their own bodies?

  7. Hey, NHGRI. Why don’t you spend money on bioethicists to prevent shit like ANIL POTTI.

    Fuckers.

    1. Anil Potti is a great name for a punk band.

  8. if the information relates to a disorder that has no interventions

    This is why conspiracy theories exist.

    Our government is willing to PAY LARGE SUMS to get advice from “ethicists” who will inform it that it’s perfectly acceptable to hide information if “there are no interventions available anyway”.

    Why not believe that some other set of ethicists has advised them to hide information related to, say, the Loch Ness Monster?

    They’re admitting up front that they consider hiding information to be among the range of possible ethical options.

  9. Is it just me or does the bio-ethicist profession attract the most morally and ethically deprived people in the whole world?

    “No you can’t have information that can save your life”

    “No you cannot have information about your unborn baby that could save its life and/or save the life and health of you carrying the baby”

    “No you cannot modify your body or genome to save your life”

    WTF?!?!

  10. What the fuck??? $6 million dollars could have gone to real medical science projects. Instead it was idiotically wasted on something of absolutely no importance. As a professional scientist, this really makes me fucking angry.

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