Tag: incidental findings

Blog Posts (8)

November 21, 2016

Ethically Sound Episode 10: Charting a Path Forward

The tenth and final episode of the Bioethics Commission’s podcast series, Ethically Sound, is now available. Today’s episode, “Charting a Path Forward,” focuses on the Bioethics Commission’s two most recent public meetings, during which the Bioethics Commission reflected on the impact of past, present, and future of national bioethics advisory bodies.
December 11, 2014

PRIM&R Conference Update: Research Ethics and Incidental and Secondary Findings

Recently, the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) facilitated a didactic workshop session at the Public Responsibility in Medicine and Research (PRIM&R) Advancing Ethical Research Conference. This past Saturday, December 6, Bioethics Commission staff led the workshop IRB Primer: Incidental and Secondary Findings. The presentation provided an overview of the Commission’s […]
October 15, 2014

Bioethics Commission to Offer Presentations at ASBH This Week

The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) is pleased to offer multiple presentations at the American Society for Bioethics and the Humanities (ASBH) Annual Meeting, scheduled for October 16-19 in San Diego, Calif. Over the course of the four day conference Bioethics Commission staff will highlight a number of bioethical issues, […]
October 8, 2014

The Bioethics Commission’s Work on Incidental and Secondary Findings and the Applications for Neuroscience

Today, Senior Policy and Research Analyst Elizabeth Pike will present on behalf of the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) at the conference “Emerging Ethical and Legal Challenges in Chronic Neurological Conditions.” The presentation is part of a two-day conference held at the Cleveland Clinic’s Global Center for Health Innovation and […]
October 6, 2014

Bioethics Commission Anticipates and Communicates in Webinar on Incidental and Secondary Findings

Two staff members of the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) will lead the October 2014 webinar for Public Responsibility in Medicine and Research (PRIM&R). Elizabeth Pike, J.D., L.L.M., Senior Policy and Research Analyst, and Nicolle K. Strand, J.D., M. Bioethics, Research Analyst, will present “Anticipate and Communicate for IRBs: Ethical […]
June 13, 2014

New Incidental Findings Conversation Series for Patients, Research Participants, and Consumers

The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) has just released a set of educational materials on incidental findings that it developed for patients, research participants, and consumers. In early May, the Bioethics Commission released primers to guide clinicians, researchers, and direct-to-consumer (DTC) companies – health professionals who manage these types of […]
May 8, 2014

Now Available: Set of Primers for Practitioners on Management of Incidental and Secondary Findings

To continue its support of bioethics education, the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) has developed and posted to Bioethics.gov a new set of primers to inform a variety of practitioners on the ethical management of incidental and secondary findings. This new set of primers includes one for clinicians, one for […]
April 15, 2014

New Video Highlights the Need for a Plan When it Comes to Incidental Findings

The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) has posted its latest video, in which Commission Members discuss their report Anticipate and Communicate: Ethical Management of Incidental and Secondary Findings in the Clinical, Research, and Direct-to-Consumer Contexts. In the three minute piece, Members highlight the essential message of the report on the […]

News (3)

May 17, 2013 2:13 pm

Gene-Testing Dispute Focuses on How Much a Patient Should Know

Should patients undergoing broad DNA testing for a specific ailment be told of unexpected findings that signal risk of cancer or other serious diseases, even if they don’t request the information?

June 20, 2012 11:57 am

Jury Is Still Out Over Disclosing Genomic Research Findings to Patients (Genetic Engineering & Biotechnology News)

Four years after developing consensus recommendations to address responsibilities of researchers and institutional review boards (IRBs) when investigators discover IFs of potential health or reproductive importance to research participants, a group of researchers have joined on a follow-up project. The latest consensus paper, published earlier this year in Genetics in Medicine, built on the prior study by considering how to identify and manage IRRs and IFs in large-scale research involving biobanks.

May 14, 2012 12:45 pm

College or Funeral Is Mother’s Wish Denied on DNA Results (Bloomberg Businessweek)

Camilla Grondahl asked genetics researcher Gholson Lyon a simple, heartbreaking question: Was she carrying a lethal gene that might kill her unborn baby? Grondahl, 29, didn’t want to terminate her pregnancy, which began in 2010. She just wanted to know what the scientist knew. “It was just more stress and worry while I was waiting for my baby to be born,” Grondahl recalled. “What do you plan for? Do you plan for him going to college or for a funeral?” Lyon said he couldn’t tell her.