Bioethics.net

February 28, 2013 12:49 pm

Furor over horsemeat reveals need for strict food labeling (NBC News)

Would you eat horsemeat?  A lot of people would not. Should you have the right to know if the meat you are eating contains horsemeat?  The answer to that question is a resounding yes…

June 21, 2012 1:19 pm

Informed consent: A broken contract (Nature)

The example points to a broad problem in research on humans — that informed consent is often not very well informed (see ‘Reading between the lines’). Protections for participants have been cobbled together in the wake of past controversies and have always been difficult to uphold. But they are proving even more problematic in the ‘big data’ era, in which biomedical scientists are gathering more information about more individuals than ever before. Many studies now include the collection of genetic data, and researchers can interrogate those data in a growing number of ways. Several US states, including California, are considering laws that would curtail the way in which researchers, law-enforcement officials and private companies can use a person’s DNA.

June 18, 2012 7:06 pm

Body organs to be taken without consent in Wales (The Telegraph)

May 4, 2012 1:34 pm

Better ethics education needed in community-based research (Phys.org)

A growing number of health research programs are collaborating with community groups to conduct research. The groups help recruit study participants, obtain informed consent, collect data and provide input on study design and procedures. But existing programs that educate researchers, community groups and institutional review boards about research ethics “fail to meet the needs of all groups that have a role in community-engaged research,” according to an article in the Journal of Empirical Research on Human Research Ethics.

April 10, 2012 12:18 pm

'Benefits and burdens' of participating in clinical research trials (News-Medical)

In one of the first studies of its kind, University of Pennsylvania School of Nursing researchers have identified what cancer patients consider the “benefits and burdens” of participating in clinical research trials. From their findings, the researchers developed a model of the five elements of decision-making (physical, psychological, economic, familial, and social) that patients with cancer use to determine whether to participate or remain in a clinical trial.

April 5, 2012 12:57 pm

Your data are not a product (Nature)

The Portable Legal Consent for Common Genomics Research (PLC-CGR) is an experimental bioethics protocol that provides maximum utility to researchers who agree to its terms and protection for the de-identified personal and genomic data volunteered by informed research subjects. Data and resulting publications from this protocol are equally available to all academic, nonprofit and commercial competitors, so that intellectual property claims should arise only on new discoveries based on the data.

April 2, 2012 9:21 am

Grady urges reform in human research (Duke Chronicle)

The way clinical studies inform patients about what they are getting involved with works no better in the U.S. than elsewhere in the world, one expert said. Patients from both developed and third world countries exhibited a similar lack of understanding of the medical research process, which limits their discernible rights, said Christine Grady, the chief of the department of bioethics at the National Institutes of Health Clinical Center.

March 2, 2012 2:18 pm

International voice in human subjects protections named NIH Clinical Center bioethics chief (NIH)

Christine Grady, Ph.D., was recently named chief of the Department of Bioethics of the National Institutes of Health (NIH) Clinical Center. Grady has served as deputy director of the department since 1996 and served as acting chief since September 2011. Her research focuses on clinical research subject recruitment, incentives, vulnerability, consents, and international research ethics. #bioethics #researchethics