Genetic studies: how the public feels

This week’s Genetic Alliance Weekly Bulletin led me to a paper that investigated public opinions on genetic research that I wanted to examine. The GA link brought me to this press release about the paper:

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….

This paper by Kaufman et al (Genetics in Medicine. 10(11):831-839, November 2008) kept me busy while waiting for a doctor’s appointment this week.

I think this is good news for the progress of research. And after we have GINA in place I might even take part in some. I would not have done so before, and I would have advised family members not to participate.

But there were a few things that struck me as interesting. First, in the study description that survey participants were to see there was no mention of possible implications of legal protection (or lack of). That’s something I would want to see in any kind of agreement and I would like to see how the public would respond with or without legal protection. {You can access the study descriptions that participants saw from the supplement page, the second PDF = Article Plus #2}

But maybe that’s just me. I’m a suspicious Yankee. In fact, in the paper it turns out that we were less likely to support the work than other regional groups.

% who would probably or definitely participate {snipped from Table 2}

Northeast: 57

Midwest: 59

South: 59

West: 64


Interestingly–91% of survey participants ‘wanted their individual research results about health risks “even if there was nothing [they] could do about them.”‘ It even went up from there when they were asked if they wanted to know if a genetic risk factor was found or if they were higher risk for a treatable or untreatable condition. This is going to require serious education of the general public to understand the data properly.

However–despite agreeing to this in the form of this survey, I wonder how many would actually go and participate. At one point the authors refer to their outcome of willingness to participate as in range with similar types of studies about donating blood or DNA for other purposes. I know it isn’t directly comparable, but the actual rate of blood donation for medical purposes is only 5%. I was shocked to hear that statistic one time. The authors do acknowledge in the discussion that support for participation is not the same as actually doing it.

An odd tidbit for people who are curious about the effectiveness of conveying information with a video format:

Viewing the video was a significant predictor of overall support for the study but not of people’s willingness to participate. Inflection, tone, and images in the audio and video may have given more concrete meaning to the words and increased understanding, may have lent a measure of credibility to the study description, or may have created a persuasive bias. However, though the difference in support for the study was statistically significant, it was not large.

For someone who spends a lot of time making movies that convey information this was a nice observation :) . But I can’t find the numbers on that.

The authors do muse about the passage of GINA and whether that would affect subsequent surveys. I wonder too. And they also conclude:

This suggests that more detailed research to explore what the public understands and believes about individual research results may be warranted.

I definitely agree with that.

The paper:

Subjects matter: a survey of public opinions about a large genetic cohort study.
Genetics in Medicine. 10(11):831-839, November 2008.
Kaufman, David PhD; Murphy, Juli MS; Scott, Joan MS, CGC; Hudson, Kathy PhD

DOI: 10:1097/GIM.0b013e31818bb3ab