DNA Biobanks: The Five Minutes Between Nashville and Dundee

Here at PredictER we're very interested in the attitudes of healthcare professionals regarding DNA biobanking. In fact, we recently collaborated in a study of attitudes at a local children's hospital. Thus, I was excited to read the results of similar survey research from Vanderbilt University School of Medicine. David A. Leiman, Nancy M. Lorenzi and some other bioinformatics folk in Nashville appear to have been working on this topic for a few years now - beginning with focus groups in 2000 and including a recent international, comparative survey. In "US and Scottish Health Professionals' Attitudes toward DNA Biobanking" [J Am Med Inform Assoc. 2008 May-Jun;15(3):357-62. Epub 2008 Feb 28. | PMID: 18308988], the authors compare the attitudes of healthcare professionals in Nashville with the attitudes of those in Dundee, Scotland. While they expected that the difference between a mostly private (U.S.) and a more socialized (U.K.) healthcare system would impact attitudes, they discovered that the attitudes were not that far apart. Presumably, the authors thought that U.S. health professionals would worry that genetic information might be misused by insurance companies in the private healthcare system and, thus, would be less likely to support biobanking. As it turns out the attitudes of the two survey groups were very similar. Of the fifteen questions in common, significant differences in attitude were found on only three questions. The Dundee professionals were slightly less supportive of creating a DNA biobank and (most importantly) were less comfortable with the idea that they might be asked to consent patients for DNA samples.

In the discussion of the results the authors speculate that time constraints in Scotland might be at the root of this slight difference in professionals' attitudes about "consenting" patients into participating in the biobank:

While many U.S. practices are expected to see patients 12-15 minutes, Scottish doctors are expected to perform the same visit in 7-10 minutes. The additional burden of consenting, or even explaining a biobank project, may be an overwhelming challenge to integrate into the existing workflow.

Those "extra" five minutes of time in which to meet a patient's needs in the U.S., therefore, might account for the greater support ("Strongly Agree" versus "Agree") for DNA biobanking. The authors also mention the difficult nature of obtaining consent for this research – without a complicated: "Traditional consent procedures require researchers to contact participants each time a new investigation is undertaken with the same existing information". Let's hope that the validity of the patient's consent isn't sacrificed to better accommodate the busy schedules of the healthcare professionals. - J.O.

Who Do You Trust ... With Your Genetic Information?

A recent post by Jane Sarasohn-Kahn of Health Populi summarizes the findings of the 2008 Edelman Trust Barometer. For those of us interested in the progress of predictive health research, who "we" trust is a key question. If participants and the community at large, including the legislators representing the community, do not trust the researchers who form biobanks and enroll participants in longitudinal studies, support will decline: the money will begin to dry up, adverse legislations will be passed, and (most importantly) potential research participants will do something else with their time and good will. Researchers will be relieved, therefore, to discover that the "Biotech/Life sciences" industry is one of the most trusted sectors in North America - a few points ahead of "Banks" and a few points behind "Technology".

One must remember, however, that the survey is limited to what the PR firm calls "opinion elites" - people Edelman's considers to be influential or, even, trend-setters. I suspect that most medical researchers hope for a more diverse demographic. Of course, even if the survey had measured the attitudes of a broader population, the findings would not be all good news for the future of predictive health research studies. The "Insurance" industry ranked only above "Media companies" on the trust-barometer in North America, and was ranked last in the global survey. Will people, even "opinion elites", be willing to participate in research if they anticipate that the results may be used unscrupulously (or to their personal disadvantage) by a distrusted insurance industry? Would you? - J.O.

Parents support genetic testing, DNA biobanks - even without available treatments.

From Child Health and Evaluation Research (CHEAR) Unit: U-M C.S. Mott Children's Hospital

UMHS Press Release:
Parents support genetic testing, DNA biobanks - even without available treatments.
C.S. Mott Children’s Hospital National Poll on Children’s Health finds 54% of parents endorse genetic testing even for diseases with no available treatments.

Website:
CHEAR - National Poll on Children's Health
C.S. Mott Children's Hospital National Poll on Children’s Health, Vol. 1, Issue 4; June 20, 2007
A publication from the University of Michigan Department of Pediatrics and Communicable Diseases and the University of Michigan Child Health Evaluation and Research (CHEAR) Unit.

DNA Biobanks and Genetic Testing - For Whom, and When?
Report Highlights
* 54% of adults endorsed genetic testing even if no effective treatment is available.
* 38% of parents were willing to have their children’s DNA stored in a government biobank.
* Adults were more likely to store DNA in a government biobank if they support genetic testing for diseases despite the lack of available effective treatment.
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Data Source
This report presents findings from a nationally representative household survey conducted exclusively by Knowledge Networks, Inc, for C.S. Mott Children’s Hospital. The survey was administered from March 14-26, 2007, to a randomly selected, stratified group of adults aged 18 and older (n=2,076) with and without children from the Knowledge Networks standing panel that closely resembles the U.S. population.

PredictER Note: SEE ALSO "Storing and Testing Children's DNA". Eye on DNA, June 20, 2007.