National Institutes of Health
last year, as part of our coverage of the 10th anniversary of the human genome science took a long look at the ethical dilemmas facing geneticists when they search on the given DNA unexpectedly turns mutation or genetic variation that could harm the health of a person, or that of their families. For example, if a DNA sequencing researchers in a study Pedigree discovers a man has a mutation that promotes Alzheimer's disease, should they track down the owner of the DNA and let him know?
Yesterday, as part of a special collection of papers Genetics in Medicine these supposedly results incident, a working group convened by the National Institutes of Health published a series recommendations on how this sensitive information should be handled. The most provocative theme of the report is a strong call for biobanks, the sites are given more DNA stored for use by outside scientists, to assume greater responsibility for the restitution of these conclusions. Traditionally, experts have argued that the researcher generate an accidental result, or their institutional review board, should assume this obligation.
The working group, headed by Susan Wolf, University of Minnesota, Twin Cities, a professor specializing in bioethics law, spent two years collecting data and comments on incidental findings. The group does not contend that the principal investigators are not responsible for the return of such information. But it recommends that each biobank has set up a multidisciplinary committee to deal with accidental discoveries and to create a linked "Central Advisory Body" that would maintain overall consistency on the issue in biobanks.
Biobank officials may be reluctant to take on this new delicate function, neurologist Robert Green of Boston University, said Science last year
"ethicists sit around a table and talk about" the importance of the return of DNA results, "but if you talk to people like me who actually helped the execution biobanks, you can not imagine how we are unable to do so, "says Green. Biobanks should reach the hundreds of thousands who have already shared and request DNA samples if they might want to return information; Currently, almost all consent forms biobank say that genetic results will not be returned. While informed consent forms change, then banks might need to interact with researchers unsure about what to share with a DNA donor and to make decisions, often on a case by case basis, before recontact a participant with a potentially overwhelming search result.
In Nature news story on the new report, Ellen Wright Clayton of the Center for Biomedical Ethics and Society at Vanderbilt University in Nashville, Tennessee, also expressed concern for formalization of a system of return of incidental findings to DNA suppliers: "It is unfortunate that the authors of the consensus statement did not address the financial implications of what they offer, because that they have in mind will be expensive and difficult, especially when the funding success is as low as it has ever been. "
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