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Genomics and Public Health Conference Highlights Telegenetics, Media Issues

By Matt Jones

BETHESDA, MD (GenomeWeb News) – At the National Genomics and Public Health Conference held here last week a number of panels and breakout sessions focused on how gene-based medicine will be used and understood by the public at large.

But beyond the widely-reported subject of genetic testing, two focal areas emerged at the conference, which was held last week in Bethesda, Md., near the National Institutes of Health: How are patients finding out about and using genetic medicine and counseling, and how are genomic discoveries being reported in the mainstream press?

Several researchers talked about how their efforts to try to bring genomic medicine to more Americans through telemedicine have so far yielded mixed results.

Sylvia Mann Au, State Genetics Coordinator for the Hawaii Department of Health, said that she has been working with the US Regional Genetics Newborn Screening Collaboratives in a national telegenetics effort using new software for videoconferencing.

In some regions, Au said, the software currently is "vastly underused – perhaps because the software is too complicated" for most patients. Another program is using a simpler system for linking patients and appears more promising because of the ease of use of the technology, Au said.

She explained that in Kansas, a telemedicine initiative has enabled one participating doctor to overcome access barriers to underserved populations and to save some time and money. But there are challenges. General technophobia keeps some people from using the programs, and administrative inertia keeps some from seeing the value and utility of telegenetics, she said.

She also said that telemedicine efforts currently run into problems caused by variations in interstate licensing and regulations for doctors who are practicing across state lines via videoconference.

Some lessons have been learned through these telegenetics efforts so far, Au said.

"The technology has to be easily accessible to the specialists," she said.

"There's an extremely high satisfaction with the families. Even if the equipment malfunctions, the families still like the telemedicine visit," she said.

She also said that telegenetics may need to be reimbursed by insurers because while the costs of travel are shifted away from the family the cost of the technology is now being borne by the providers.

Another study outlined at the conference sought to use telemedicine to make certain populations more aware of genetic testing.

"Cancer disparities [among socioeconomic groups] are very well established, and new technologies are likely to create new disparities," said Galen Joseph, an assistant professor in the Department of Anthropology, History, and Social Medicine at the University of California, San Francisco.

"Overall, very few women who are at high-risk [for breast cancer by having BRCA mutations] may be aware of the risk," she said.

The study Joseph worked on used telephone operators at health centers to provide questionnaires to women who had called the centers for other reasons in order to help identify their risk for breast cancer. Women who scored high on risk were encouraged to call back for genetic counseling, and two months later those who were identified as at high risk but who did not call for counseling were called back. The aim of this trial was to use telephone surveys to recruit low-income women who are at high risk for breast cancer to learn about and consider whether they should take genetic tests.

Joseph explained that the data showed that this approach appears to be feasible and that it could be a low cost way to identify at-risk women of low socioeconomic status and to assist them in getting access to genetic counseling.

In another session, Kelle Steenblock, a senior VP of Clinical Services at Informed Medical Decisions (Informed DNA), described her company's national network of genetics experts who provide their services by phone.

Steenblock explained that there are less than 2,300 board-certified genetic counselors in the US, and because most of them are based in urban areas, rural regions are underserved.

She said that Informed DNA's service, which is paid for mostly through insurance reimbursements, have been "well received" and that 66 percent of their patients would not have used a genetic counseling service if it were not telephone based, according to an internal study at the company.

A Critical View of Blogs and the Media

Most people, however, do not hear about genomics or personalized medicine through outreach programs or by linking up via videoconference with genetic counselors. They generally find out about biomedical advances through mainstream media outlets and the internet.

Because an important part of public health is public education and awareness, this conference put a spotlight on the role media plays in shaping knowledge of genomics and personalized medicine.

Aiming to take a close-up look at how new media is presenting genomics, Laura Wagner, a lab manager at the National Human Genome Research Institute, surveyed the varieties of genetics blogs that are available on the web and looked at their levels of credibility and their influence.

"Patients are starting to bring in information from the internet to their doctors," Wagner said, explaining that "online genetics information is becoming more important."

How much credibility these blogs have and how influential they are is important, she said, because "information that is influential is more likely to be seen."

Her survey found 94 English language blogs on the web that focused on genetics and met certain basic criteria. Some focused on science, others on heredity, some on religion, and others on a variety of genetics-linked subjects.

Her study measured credibility by looking at several indicators, such as what organizations the sites are affiliated with, whether the writers are identified, if readers can leave comments or not, how often the sites are updated, and how many in-links the blogs have from other sites.

Some of these blogs were run by individuals with no affiliations, some were affiliated with not-for-profit organizations such as universities or institutes, and some were run by private companies.

What her study found was that even though universities and medical facilities are viewed as the most credible sources for biomedical information by the public, these institutions had the fewest number of blogs when compared with for-profit institutions and unaffiliated individuals.

She said that the influence of the blogs is related to "dynamic indicators," such as number of comments or frequency of posts, and not with their affiliation.

"What I found most striking is that organizations that are the best-positioned to have credible blogs, such as non-profits, currently are not well represented," she added.

While those results could mean bad news for physicians when their patients arrive with information they've downloaded from the web, Wagner suggested that they also could mean simply that what is needed is a better way of gauging credibility.

The most common way the public finds out about genomic medicine is likely through mainstream media news outlets, which may stir concerns among genomics researchers and public health experts alike, according to one panel at the conference.

Mary Carmichael, a senior writer at Newsweek and a research fellow at the Massachusetts Institute of Technology, said that "journalists are the people who take most of the blame for the hype" that often surrounds genetics news stories in the mainstream media.

The standard understanding is that "scientists are very careful and deliberate and precise in their language when they publish their research, and journalists are very slapdash in reporting on it, and the public is made up of passive consumers who can't really tell the difference."

She pointed to recent coverage of the so-called 'liberal gene' variant that was widely reported in recent months. The story was reported "rottenly," as behavioral genomics stories often are, Carmichael said, with the novelty of the notion that an inborn biological script could control political beliefs overriding any journalistic integrity.

But scientists are not entirely guilt-free, she said, for over-hyping stories about new discoveries. Scientists err most when they make declarative predictions about new drugs, for example, saying that a certain type of drug will provide a cure for cancer someday, she explained.

Journalists and the public should turn up their "BS detectors" on science findings, and journalists in particular can "start looking at press releases as starting points, rather than endpoints," she added.

Another thing reporters could do is change their approach to focus their coverage on upstream reporting.

"They can report on science as a process. They can talk a little bit less about findings and a little bit more about methods. I think this is especially important in genomics because the methods are still being worked out," she continued.

Scientists, too, can take steps to promote responsibility in science reporting.

"They can keep an eye on those press releases, for one thing. They have the power to prevent hype at that level. They can stop with the predictions — at least don't make them in terms of years. And, finally, they can agree to talk to journalists about upstream coverage," she explained.

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