The Right to Know—or Not

Consumers, patients, and study participants should be made aware of potential incidental findings, according to a federally-appointed bioethics panel.

Written byTracy Vence
| 2 min read

Register for free to listen to this article
Listen with Speechify
0:00
2:00
Share

SXC.HU, KURHANCompanies, clinicians, and researchers ought to inform consumers, patients, and study participants about research findings that may impact their health. From there, the parties should make a shared decision as to whether the patient wants to be alerted to unexpected results. That’s according to the Presidential Commission for the Study of Bioethical Issues, which today (December 12) issued a report containing recommendations for dealing with incidental or secondary findings uncovered in the direct-to-consumer (DTC), clinical, and research settings.

“The importance of incidental findings, and the problem, is only increasing in magnitude,” commission member Stephen Hauser told reporters this week. “Each of us has scores of deleterious mutations in our genes and these will be picked up every time a whole-genome sequence is obtained.” And high-resolution imaging techniques often uncover unexpected abnormalities, he noted.

What to do about unexpected health-related findings “is an issue that affects everybody,” commission chair Amy Gutmann said during the press briefing. In their report, Gutmann, Hauser, and colleagues propose that DTC companies, clinicians, and researchers ought to anticipate incidental findings that could come up and communicate them before procedures or tests are administered. The commission also advocates shared decision-making between the two groups.

Earlier this year, the American College ...

Interested in reading more?

Become a Member of

The Scientist Logo
Receive full access to more than 35 years of archives, as well as TS Digest, digital editions of The Scientist, feature stories, and much more!
Already a member? Login Here
February 2026

A Stubborn Gene, a Failed Experiment, and a New Path

When experiments refuse to cooperate, you try again and again. For Rafael Najmanovich, the setbacks ultimately pushed him in a new direction.

View this Issue
Human-Relevant In Vitro Models Enable Predictive Drug Discovery

Advancing Drug Discovery with Complex Human In Vitro Models

Stemcell Technologies
Redefining Immunology Through Advanced Technologies

Redefining Immunology Through Advanced Technologies

Ensuring Regulatory Compliance in AAV Manufacturing with Analytical Ultracentrifugation

Ensuring Regulatory Compliance in AAV Manufacturing with Analytical Ultracentrifugation

Beckman Coulter Logo
Conceptual multicolored vector image of cancer research, depicting various biomedical approaches to cancer therapy

Maximizing Cancer Research Model Systems

bioxcell

Products

Sino Biological Logo

Sino Biological Pioneers Life Sciences Innovation with High-Quality Bioreagents on Inside Business Today with Bill and Guiliana Rancic

Sino Biological Logo

Sino Biological Expands Research Reagent Portfolio to Support Global Nipah Virus Vaccine and Diagnostic Development

Beckman Coulter

Beckman Coulter Life Sciences Partners with Automata to Accelerate AI-Ready Laboratory Automation

Refeyn logo

Refeyn named in the Sunday Times 100 Tech list of the UK’s fastest-growing technology companies