Included with most of these services is the ability for users to download their “raw” genetic data, which can be further analyzed using third-party apps. But little is known about how and why consumers are using these apps, or about a variety of potential risks associated with these apps — such as false positives about health information or unknowingly linking a family history to an unsolved crime.

“It’s the proverbial ‘wild West’ of genetic interpretation,” said , a ����Ӱ�Ӵ�ý research scientist in the Department of Biostatistics who recently completed her doctorate in the School of Public Health. She’s the lead author of a new paper, “Third-party genetic interpretation tools: a mixed-methods study of consumer motivation and behavior,” that was published today in .

The team surveyed more than 1,000 people who had paid to obtain their genetic profile through a service like 23andMe or AncestryDNA. Most respondents reported that they downloaded data and went on to use a third-party application like Promethease or GEDmatch.

“We found that individuals who are initially motivated to learn about ancestry and genealogy frequently end up engaging with health interpretations of their genetic data, too. This has implications for the regulation of such testing and interpretation practices,” said , associate professor of bioethics and humanities, UW School of Medicine, and the senior author of the paper.

The study found that nearly all consumers who took the survey (89%) download their raw data and more than half of those who downloaded also used third-party tools (56%) to research both genealogical and ancestry information on third-party sites.

But third-party interpretation is largely unregulated and there are potential risks for consumers, Nelson said. And there are unanswered questions: What did you consent to? What do you think your data is going to be used for?

It’s often unclear what happens to the consumer data once it’s provided to a third-party tool. There are privacy risks, and even the chance that the genetic data may help law enforcement solve crimes. Researchers worry about accuracy, data privacy, reliability and the nation’s limited health resources.

False positives for health conditions can also cause emotional strain and put pressure on an already taxed health care system. People may find out about potentially serious diseases without much context or a support system.

On the other hand, third-party tools can also enable crowdsourced research and encourage people to learn about genetics.

Overall, Nelson is pleased that more people are taking an interest in genomics, but more research is needed on how people are using their information.

“We just had very little data on this,” Nelson said.

, a UW professor of bioethics and humanities, also co-authored the paper.

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For more information, contact Nelson at sarahcn@uw.edu.

Interview transcription was supported by funds from the UW Institute for Public Health Genetics. This work was partially supported by the National Human Genome Research Institute (NHGRI) and the National Cancer Institute (NCI) CSER Consortium, U01 HG006507 and U24 HG007307 (Jarvik, PI). This research used statistical consulting resources provided by the Center for Statistics and the Social Sciences at UW. REDCap and the Participant Portal at ITHS are supported by the National Center for Advancing Translational Sciences of the National Institutes of Health under Award Number UL1 TR002319.

CPAP use for sleep apnea hushes cancer-related genes

A common treatment for sleep apnea, continuous positive airway pressure, or CPAP, may be associated with the suppression of cancer-related genes, according to a new UW . The link between cancer and sleep apnea is controversial, and the current study is among the earliest to systematically examine the effects of therapeutic CPAP on gene transcription. Dr. Sina Gharib, lead author and UW assistant professor of medicine, said that the study is a “preliminary step in our understanding of how the physiological disturbances caused by sleep apnea adversely affect cellular function.” Read more on .

Ethical medicine, Lesson 1: Recognize your viewpoint

How do doctors learn to guide patients’ decisions when there are alternative courses of action or when dealing with polarizing medical choices, such as abortion and genetic testing? In a Q&A, Wylie Burke, a UW professor of bioethics and humanities, explains how she helps medical students and residents understand their own assumptions, expectations and biases. “Ethics is every day, not just the dramatic, should-we-pull-the-plug dilemmas. Ethics is being competent in your field; that’s a fundamental ethical obligation for a professional,” she said. Read more on .

In Vietnam, reducing harm of battery recycling

Many Vietnam communities make money by recycling lead from used car batteries, but at the cost of widespread lead contamination. Researchers from the UW School of Public Health with collaborators at the Vietnamese National Institute of Occupational and Environmental Health analyzed surface lead levels in nine homes and a school in a village near Hanoi. The measurements allowed the team to discover how lead spreads through a community. Now they are developing an education and training program and a health assessment. Read more on .

Through imaginative storytelling and art, “The Return” conveys environmental health from a Native American perspective.  A center within the UW School of Public Health worked with Native American tribes to create and publish the illustrated story as a 32-page comic book.

One of the goals of this Native Tradition, Environment and Community Health Project was to find out how Native American ways of understanding the world and our place in it differ from the Western concept of environmental health. Surveys, interviews, and talking circles identified three core themes of Native environmental health: community, wellness, and inter-relationship.

“The Return” was created from the findings. It is a dreamlike account of a Native woman and her baby, and tells how these three concepts are passed to the next generation.

Michelle Montgomery, senior fellow in the UW Department of Bioethics and Humanities at the UW Center for Genomics & Healthcare Equality, and Nicholas Salazar, a student at the Institute for American Indian Arts in Santa Fe, N.M., developed the book. Montgomery is a tribal member affiliated with the Haliwa Saponi and Eastern Band Cherokee.

The UW Center for Ecogenetics & Environmental Health and the Northwest Indian College co-managed the project. The effort began in 2008 with a collaborative grant from the National Institute for Environmental Health Sciences.

The book was distributed at the 2013 American Indian Higher Education Consortium Student Conference in Green Bay, Wisc. More dissemination opportunities are planned. The end of the book contains a discussion guide and suggestions for related art projects.

“The Return” comic book is .