genetics testing – The blog of the 2009 - 2017 Presidential Commission for the Study of Bioethical Issues Mon, 09 Jan 2017 23:23:29 +0000 en-US hourly 1 Using the Bioethics Commission’s Pedagogical Materials on Informed Consent and Incidental Findings to Engage Students Undergoing Personalized Genetic Testing Tue, 06 Jan 2015 15:50:07 +0000 Recently, some U.S. educational institutions have used personalized genetic testing (PGT) as a pedagogical tool for teaching human genetics, allowing students to generate real-world experiences with technology relevant to course content. In a recent article published in the Journal of Microbiology & Biology Education, Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) staff members Tenny Zhang and Misti Ault Anderson assert that PGT also can be an effective tool for incorporating ethics into the biology classroom. Experiencing PGT first-hand represents a chance for students to reflect upon and discuss the many facets of genetic testing, including the interpretation, limitations, and potential impacts on individuals and society.

PGT in the educational setting provides an opportunity to integrate ethical considerations into the science classroom since genetic testing can raise a number of ethical concerns, including ensuring informed consent, protecting privacy, and promoting accessibility, among others. Integrating discussion about ethics into biology courses that offer PGT can help students to make direct and personal connections between the science learned in class and related bioethical challenges, and encourage consideration of the broader ethical implications of genetic testing.

While it has not taken a position on the use of PGT in the classroom itself, the Bioethics Commission has consistently emphasized in its work the need for ethics education across various disciplines, educational levels, and settings. As part of its ongoing effort to support bioethics education, the Bioethics Commission developed educational materials to facilitate ethics integration.

The Bioethics Commission’s topic-based modules, which are designed to be flexible to support multiple approaches to implementation and can be adapted into existing curricula in various educational settings, can provide a helpful resource to instructors using PGT in classrooms. Report-specific modules about informed consent in the context of whole genome sequencing (Informed Consent in Privacy and Progress) and incidental findings (Informed Consent in Anticipate and Communicate) are relevant to PGT and might help encourage students to consider the ethical complexities of genetic testing. The Conversation Series primer on incidental findings for consumers helps them to understand what incidental findings might arise in the direct-to-consumer (DTC) context and prepares them to ask the DTC provider relevant and important questions.

The full article by Zhang and Anderson, “Personalized Genetic Testing as a Tool for Integrating Ethics Instruction into Biology Courses,” can be read here.

For more information on all of the Bioethics Commission’s educational efforts, please watch the video, Promoting and Providing Materials for Bioethics Education, here.

All Bioethics Commission pedagogical materials are publicly accessible at

The Bioethics Commission encourages feedback on its materials at

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Interpreting your genetics test results: No easy feat Mon, 28 Feb 2011 21:46:02 +0000 Vanderbilt University recently asked its second-year medical students to take personal genetics testing through the company 23andMe in order to better understand how to counsel patients who take the test. Dr. Ellen Wright Clayton, the Director of the Center for Biomedical Ethics and Society at Vanderbilt, also decided to join in.

Clayton, a medical doctor, told the Presidential Commission for the Study of Bioethical Issues today that she knew how to interpret the results. But her experience underscored a concern whether others outside the medical field would be able to do so.

“I brought to bear everything I know about genetics to explain everything I would find worrisome,” she said. “But the fact is most people aren’t going to have that. There isn’t going to be a kindly genetics counselor to help you deal with this. The idea you are going to have anything even remotely like genetic counseling on this is illusory.”

Clayton raised one of several ethical issues surrounding genetics testing and neuro-imaging during a day-long public meeting in Washington. The panel, which serves as an advisory panel on bioethical issues to President Obama, convened a number of experts and will decide later whether to launch a study on either subject.

Clayton told the commission that she believed that genome testing will be part of clinical care in the near future and that it will start to be routinely done on newborns. She also said that limiting access to the information “will be difficult, if not impossible. Patients will have access to the information. This information will be out there.”

What are the challenges? She said that errors will be inevitable and that “the understanding of genomics is going to be incomplete. People will demand a follow up that is often not evidence-based, and not always ethically appropriate.”

Susan Wolf, the McKnight Presidential Professor of Law, Medicine & Public Policy at the University of Minnesota, also told the panel that a “fire hose of information” was being generated by research in genetics and neuro-imaging. She said that research “routinely generates findings of clinical or reproductive importance.”

She said that she believes there is an emerging consensus that suggests researchers had an ethical duty to report “incidental findings” of participants to them.

But Clayton asked if health practitioners would be able to properly evaluate it.

In an interview after the session, she brought up her 23andMe results. She said one test result showed a heightened risk for one disease.

“I had one trait that showed a risk, but I knew that almost all my lifestyle factors were protective,” she said. “So I said, ‘Whatever.’ I was able to put it into context. It didn’t change anything except reinforce my willingness to do routine screening. But I’m concerned that others won’t have the enough information to put into context.”

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DNA sleuthing: OK to snatch a wine glass? Mon, 28 Feb 2011 16:53:33 +0000 The Presidential Commission for the Study of Bioethical Issues is considering today whether to take up an examination now of ethical issues surrounding neuro-imaging and genetic testing. If it decides to do so, Dr. Francis S. Collins, Director of the National Institutes of Health, had some advice on where to focus.

Collins, the lead speaker in two days of meetings in a downtown Washington, D.C. hotel, said he saw three potential areas: (1) genetic discriminations; (2) ethical issues around unexpected findings from genetic testing; (3) and forensic application of DNA testing.

He suggested the Commission focus on area No. 3 because of its importance and the paucity of study on the issue.

“Identifying perpetrators by DNA matching is expanding rapidly,” Collins said. For example, “in the whole issue of surreptitious collection, it is possible to do this with a discarded cigarette or a glass of wine left at the table after a person has left a restaurant. Is there some limit placed on this? Are we comfortable with that?”

He said society may feel OK about collecting DNA samples from the saliva on a wine glass “if a person performed a heinous act,” but what about collection of a DNA sample of someone running for political office, he asked. “It also may be done for making predictions about that individual’s future,” he said. “If someone is running for president, wouldn’t you like to know” about his or her health for the next eight years?

In that case, he said, the ethical issues were not clear. Other ethical concerns in forensic use of DNA samples: tracking those accused of crimes through relatives; making predictions of the possible age range of the perpetrator (some tests now claim to know plus/minus nine years); predicting ancestry of the criminal; predicting physical appearance; identifying recent travel; and assessing the presence of a disease.

In a question-and-answer session, Collins addressed other pressing ethical issues around genetic testing, including those surrounding pregnancy, and how couples deal with information about the risk of disease pinpointed by the tests.

“It’s an enormous health care challenge, a looming potential problem,” Collins said. “But it’s also an opportunity for prenatal counseling. These issues generally happen after pregnancy, but many couples would like to know about a long list of recessive diseases prior to pregnancy.”

That led to questions about whether doctors and researchers should tell patients about results that were not related to a specific test. What were the ethics in that?

Commission member Dr. John D. Arras, Porterfield Professor of Biomedical Ethics and Professor of Philosophy at the University of Virginia, commented: “There’s a conflict of values here, with regard to access to all this genetic information on the marketplace. It seems the more expert you get, the more wary you are of information you give to people. On the other hand, you have a free market libertarian sensibility of, ‘It’s my body, my stuff, and I should have access to it.’ You talk about the need for education and I’m just wondering whether there’s room for regulation as well. What do we do with all this information floating around out there?”

Collins said there should be a need for regulation of products that make fraudulent scientific claims on genetic testing results. He said the NIH was establishing a genetic testing registry that would examine the foundation of claims made by companies. And what about giving people information outside the focus of the test?

“My personal view is it’s hard to take a stance that is paternalistic, such as ‘There, there, it’s bad for you to have information about yourself because this is information that you cannot handle.’ That does not feel right. But we do have a responsibility as a society to protect against bogus information” made by companies.

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