Widespread public support for large genetic study
A Boston University School of Medicine-led research team has discovered a more efficient way to create induced Pluripotent Stem (iPS) cells, derived from mouse fibroblasts, by using a single virus vector instead of multiple viruses in the reprogramming process. The result is a powerful laboratory tool and a significant step toward the application of embryonic
Full Post: Discovery of more efficient way to create induced Pluripotent Stem (iPS) cells
Four in five Americans support the idea of a nationwide study to investigate the interactions of genes, environment and lifestyle, and three in five say they would be willing to take part in such a study, according to a survey released today.
The research was conducted by the Genetics and Public Policy Center at Johns Hopkins University with funding from the National Human Genome Research Institute (NHGRI) of the National Institutes of Health (NIH).
In a plenary session at the American Society of Human Genetics’ annual meeting in Philadelphia, and in a paper published in the advance online edition of Genetics in Medicine, researchers presented results of their survey that sought public opinions about the prospect of a national study that would bank DNA and other biological samples from thousands of volunteers and track the volunteers’ health over time. Researchers often refer to this type of study as a cohort study, with one of the best-known examples being the Framingham Heart Study in Massachusetts.
“Our survey found that widespread support exists in the general public for a large, genetic cohort study. What’s more, we found little variation in that support among different demographic groups,” said David Kaufman, Ph.D., lead author of the paper and project director at the Genetics and Public Policy Center, which is located in Washington.
Various experts have suggested initiating a nationwide cohort study to address the many unanswered questions about how genetic and non-genetic factors interact to influence risk of common diseases. As currently envisioned, such a study might collect DNA and other samples from at least 500,000 people who are representative of the U.S. population and then follow them over many years to see how their genetic make-ups interact with lifestyle and environmental factors to affect their health.
The online survey of 4,659 U.S. adults was conducted between December 2007 and January 2008. When asked about their support for and willingness to participate in a large genetic cohort study, 84 percent of respondents supported the study and 60 percent indicated they would definitely or probably participate in such a study if asked.
Survey respondents were carefully selected to reflect the demographic makeup of the United States. No significant differences in support or willingness to participate were observed between whites, Hispanics, African Americans and Asians. American Indian and Alaska Native respondents expressed less support for the study (65 percent), but were just as likely to be willing to participate (63 percent) as other respondents.
Genetics and Public Policy Center researchers also looked at what factors might increase people’s willingness to take part in a large genetic cohort study. According to the survey’s results, the factors with the greatest impact on willingness to participate were a commitment to returning research results to individual volunteers, and an offer of compensation. On the flip side, three in four respondents said they would be less likely to participate if they could not receive their individual research results.
When asked to rank the possible benefits of participating in a national genetic cohort study, more than two-thirds of those surveyed considered “receiving information about my health” to be a very important benefit. In contrast, only about one-third said monetary compensation would be very important.
“The public’s eagerness to receive individual research results suggests that the research community may need to reassess its stance of ‘protecting’ research participants from their data and look for practical ways to return such results,” said Kathy Hudson, Ph.D., the paper’s senior author and director of the Genetics and Public Policy Center. However, Dr. Hudson noted that even if individual results were not returned, more than half of people surveyed said they probably would still go ahead and participate in a nationwide genetic cohort study.
Sample selection and online administration of the survey was managed by the consumer information company Knowledge Networks under the guidance of the Genetics and Public Policy Center. The margin of error for the public opinion portion of the survey was plus or minus 1.6 percent.
By the time they have been diagnosed with Alzheimer’s disease, many patients’ decision-making ability is so impaired that they cannot give informed consent to participate in research studies. Close family members are left with the decision, but there is no clear policy for this so-called “surrogate” consent. Because of that, research about the increasingly
Full Post: Most support Alzheimer’s research based on family consent
A new study involving health care systems in 21 countries — and the prospects for change in response to such common pressures as rising costs and aging populations — casts doubt on the possibility of major overhauls of any of these systems because of the history and traditions that created them. The findings, published on
Full Post: Study looks at health care in 21 countries
Leaders in health care and health care policy feel strongly that the way we pay for health care in the U.S. must be fundamentally reformed. The latest Commonwealth Fund/Modern Healthcare Health Care Opinion Leaders Survey reports that more than two-thirds (69%) of respondents expressed strong dissatisfaction with the current system, which is generally based on
Full Post: Survey finds health care in the U.S. must be fundamentally reformed
If a case of avian flu is discovered in a U.S. poultry flock, it’s likely that poultry consumption would decline. The level of decline would also be likely to vary in different parts of the nation. Kansas State University surveyed 2,000 people by mail in Wichita, Kan., and Los Angeles - 1,000 in each city
Full Post: If avian flu hits poultry consumption could decline
Government plans to make certain prescription-only drugs for common problems available over the counter have overwhelmingly been given the thumbs down by healthcare professionals, reveals a survey of readers of the influential Drug and Therapeutics Bulletin (DTB). The prevailing view among readers, many of whom are healthcare professionals working in primary care, is that drug
Full Post: Thumbs down by experts on plans to make certain meds OTC