Forum for Science, Industry and Business

Sponsored by:     3M 
Search our Site:

 

'Recruitment by genotype' for genetic research poses ethical challenges, study finds

29.06.2012
A potentially powerful strategy for studying the significance of human genetic variants is to recruit people identified by previous genetic research as having particular variants.

But that strategy poses ethical challenges to informed consent, as well as potential risks to the people recruited, and it is unlikely that there is a "one-size-fits-all" solution, concludes an article in IRB: Ethics & Human Research.

The advantage of "recruitment by genotype" is that it eliminates the time-consuming, expensive process of screening new populations to find subjects who have the genetic variant of interest. The ethical challenge is that it requires the disclosure to individuals of genetic information discovered about them in prior research – for example, research on tissue samples that they donated for scientific study. Such information can carry risks and harms because it is often preliminary and easily misinterpreted, and it may be unwanted by some individuals. But without this information, potential participants would be uninformed about why they are being recruited for the new study.

As the first step toward developing ethical guidelines on genotype-driven recruitment, the authors conducted an online survey of 201 chairs of institutional review boards (IRBs). The survey asked a series of questions about 1) the conditions that should be met before recontacting individuals for genetic research recruitment, and 2) whether individuals' genetic research results from the first study should be disclosed as part of the recruitment process for the second study.

The responses were diverse and in some cases contradictory. Only 37 percent of IRB chairs agreed with the general statement, "Researchers should be allowed to contact participants in one genetic research study in order to invite their participation in another genetic research study." But more detailed questions revealed greater willingness of permit contacting of participants if certain conditions were met. For example, 91 percent said that it would be important that the possibility of such contact was disclosed during the consent process for the first study.

However, when the researchers presented the respondents with a hypothetical scenario in which the original consent form did not mention the possibility of contact about future research, 51 percent of the IRB chairs said they definitely or probably would allow the researcher to contact eligible participants anyway. The findings suggest that while consent disclosures are important and highly preferable, "not all chairs necessarily view them as imperative," the authors concluded.

There was a similar variation in response to questions about offering people information about their genetic results from previous studies. Only 42 percent of IRB chairs agreed with the general statement, "Each participant should be offered his/her individual genetic results from the first study when contacted about taking part in the second study." But most said that specific conditions would be important in determining whether it was ethically acceptable to reveal that information: 87 percent of respondents said that statements in the consent form for the first study concerning disclosure of individual genetic research results would be important, 86 percent cited the level of clinical validity (defined as "the accuracy with which the presence of a gene variant predicts the presence of a clinical condition or predisposition"), and 76 percent cited the level of clinical utility (defined as "the availability and effectiveness of interventions aimed at avoiding the adverse clinical consequences of a gene variant").

The survey concluded with questions about specific ethical dilemmas involved in genotype-driven research recruitment. For example, asked to weigh the value of avoiding disclosure of genetic information with uncertain clinical utility against the value of promoting participants' autonomy in determining the utility of the information, 46 percent chose disclosure and 39 percent chose autonomy.

"A major consequence of these findings is that it is unlikely that there will be a "one-size-fits-all solution, but rather several approaches to genotype-driven recruitment that may be ethically acceptable depending on a variety of context-dependent factors," the authors concluded. The two strongest context-dependent factors identified in the survey were 1) disclosure made during informed consent for the original study, and 2) the clinical validity (and, to a slightly lesser degree, the clinical utility) of the information.

The authors are Laura M. Beskow, MPH, PhD, assistant research professor of the Duke Institute for Genome Sciences and Policy at Duke University; Emily E. Namey, MA, clinical research coordinator, Duke Institute for Genome Sciences and Policy; Patrick R. Miller, PhD, postdoctoral fellow in the Social Science Research Institute at Duke University; Daniel K. Nelson, MS, CIP, director of the Office of Human Research Ethics and professor at the University of North Carolina, Chapel Hill; and Alexandra Cooper, PhD, associate director for education and training at the Social Science Research Institute at Duke University.

Michael Turton | EurekAlert!
Further information:
http://www.thehastingscenter.org

More articles from Studies and Analyses:

nachricht Researchers simplify tiny structures' construction drip by drip
12.11.2018 | Princeton University, Engineering School

nachricht Mandibular movement monitoring may help improve oral sleep apnea devices
06.11.2018 | Elsevier

All articles from Studies and Analyses >>>

The most recent press releases about innovation >>>

Die letzten 5 Focus-News des innovations-reports im Überblick:

Im Focus: A Leap Into Quantum Technology

Faster and secure data communication: This is the goal of a new joint project involving physicists from the University of Würzburg. The German Federal Ministry of Education and Research funds the project with 14.8 million euro.

In our digital world data security and secure communication are becoming more and more important. Quantum communication is a promising approach to achieve...

Im Focus: Research icebreaker Polarstern begins the Antarctic season

What does it look like below the ice shelf of the calved massive iceberg A68?

On Saturday, 10 November 2018, the research icebreaker Polarstern will leave its homeport of Bremerhaven, bound for Cape Town, South Africa.

Im Focus: Penn engineers develop ultrathin, ultralight 'nanocardboard'

When choosing materials to make something, trade-offs need to be made between a host of properties, such as thickness, stiffness and weight. Depending on the application in question, finding just the right balance is the difference between success and failure

Now, a team of Penn Engineers has demonstrated a new material they call "nanocardboard," an ultrathin equivalent of corrugated paper cardboard. A square...

Im Focus: Coping with errors in the quantum age

Physicists at ETH Zurich demonstrate how errors that occur during the manipulation of quantum system can be monitored and corrected on the fly

The field of quantum computation has seen tremendous progress in recent years. Bit by bit, quantum devices start to challenge conventional computers, at least...

Im Focus: Nanorobots propel through the eye

Scientists developed specially coated nanometer-sized vehicles that can be actively moved through dense tissue like the vitreous of the eye. So far, the transport of nano-vehicles has only been demonstrated in model systems or biological fluids, but not in real tissue. The work was published in the journal Science Advances and constitutes one step further towards nanorobots becoming minimally-invasive tools for precisely delivering medicine to where it is needed.

Researchers of the “Micro, Nano and Molecular Systems” Lab at the Max Planck Institute for Intelligent Systems in Stuttgart, together with an international...

All Focus news of the innovation-report >>>

Anzeige

Anzeige

VideoLinks
Industry & Economy
Event News

“3rd Conference on Laser Polishing – LaP 2018” Attracts International Experts and Users

09.11.2018 | Event News

On the brain’s ability to find the right direction

06.11.2018 | Event News

European Space Talks: Weltraumschrott – eine Gefahr für die Gesellschaft?

23.10.2018 | Event News

 
Latest News

In focus: Peptides, the “little brothers and sisters” of proteins

12.11.2018 | Life Sciences

Materials scientist creates fabric alternative to batteries for wearable devices

12.11.2018 | Materials Sciences

A two-atom quantum duet

12.11.2018 | Physics and Astronomy

VideoLinks
Science & Research
Overview of more VideoLinks >>>