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!
Diagnoses: When Are Several Opinions Better Than One?
19.07.2016 | Max-Planck-Institut für Bildungsforschung
High in calories and low in nutrients when adolescents share pictures of food online
07.04.2016 | University of Gothenburg
Ultrafast lasers have introduced new possibilities in engraving ultrafine structures, and scientists are now also investigating how to use them to etch microstructures into thin glass. There are possible applications in analytics (lab on a chip) and especially in electronics and the consumer sector, where great interest has been shown.
This new method was born of a surprising phenomenon: irradiating glass in a particular way with an ultrafast laser has the effect of making the glass up to a...
Terahertz excitation of selected crystal vibrations leads to an effective magnetic field that drives coherent spin motion
Controlling functional properties by light is one of the grand goals in modern condensed matter physics and materials science. A new study now demonstrates how...
Researchers from the Institute for Quantum Computing (IQC) at the University of Waterloo led the development of a new extensible wiring technique capable of controlling superconducting quantum bits, representing a significant step towards to the realization of a scalable quantum computer.
"The quantum socket is a wiring method that uses three-dimensional wires based on spring-loaded pins to address individual qubits," said Jeremy Béjanin, a PhD...
In a paper in Scientific Reports, a research team at Worcester Polytechnic Institute describes a novel light-activated phenomenon that could become the basis for applications as diverse as microscopic robotic grippers and more efficient solar cells.
A research team at Worcester Polytechnic Institute (WPI) has developed a revolutionary, light-activated semiconductor nanocomposite material that can be used...
By forcefully embedding two silicon atoms in a diamond matrix, Sandia researchers have demonstrated for the first time on a single chip all the components needed to create a quantum bridge to link quantum computers together.
"People have already built small quantum computers," says Sandia researcher Ryan Camacho. "Maybe the first useful one won't be a single giant quantum computer...
14.10.2016 | Event News
14.10.2016 | Event News
12.10.2016 | Event News
26.10.2016 | Power and Electrical Engineering
26.10.2016 | Awards Funding
26.10.2016 | Power and Electrical Engineering