Sunday, 23 February 2014

The new network Family Ethics

The former  Ethics of Family in Health and Social Care Research Consortium has evolved into the newly erased network of ethics of family. Last July 2013 we received a grant by NWO to develop an international network on ethics of family. The project is called „Responsibility in Change”.

The aim of this network is to develop new theoretical approaches that can address the contemporary challenges to responsibility created by new areas of healthcare practice and intervention. In particular to: consider the significance of people's key relationships, such as family and community, in how they deliberate and make decisions about responsibilities they must respond to.

These aims will be addressed by producing the following:
-To submit an international research proposal
-To produce high quality publications (journal papers and edited collection)
-To develop a formal structure to manage, oversee and develop the international research network’s long term future

We hope to collaborate with many others in the future!
See our new address:www.familyethics.net

Tuesday, 24 September 2013

The Ethics of Contacting Family Members of a Subject in a Genetic Research Study to Return Results for an Autosomal Dominant Syndrome - The American Journal of Bioethics - Volume 13, Issue 10

Abstract

This case explores the ethical landscape around recontacting a subject's relatives to return genetic research results when the informed consent form signed by the original cohort of subjects is silent on whether investigators may share new information with the research subject's family. As a result of rapid advances in genetic technology, methods to identify genetic markers can mature during the life course of a study. In this case, the investigators identified the genetic mutation responsible for the disorder after a number of their original subjects had died. The researchers now have the ability to inform relatives of the subject about their risk of developing the same disease. Mark Rothstein, JD, from the University of Louisville School of Medicine, provides an overview of the medical/scientific, legal, and ethical issues underlying this case. Lauren Milner, PhD, and colleagues at Stanford University explore how the relationship between researcher and subject affect this debate. Seema Shah, JD, and colleagues at the National Institutes of Health and University of California, Los Angeles (UCLA) discuss whether and how requirements of the duty to warn are applicable in this case.




Taylor & Francis Online :: The Ethics of Contacting Family Members of a Subject in a Genetic Research Study to Return Results for an Autosomal Dominant Syndrome - The American Journal of Bioethics - Volume 13, Issue 10