NEW YORK (GenomeWeb) – The National Institutes of Health has awarded a team of researchers led by the Hastings Center a three-year, $1.1 million grant to examine the ethical and practical issues around non-invasive prenatal tests based on next-generation sequencing.
With the funding, the researchers will also collaborate with a working group of clinical experts, social scientists, patient advocates, and philosophers to craft guidelines for the use of such tests.
"The next generation of prenatal tests are set to offer prospective parents an enormous amount of information about the genetic makeup of their fetuses," Josephine Johnston, director of research at the center and principal investigator of the grant project, said in a statement. "It is our job, through this project, to identify policies and practices that can inform, support, and empower patients to make testing decisions that are consistent with their goals and values."
Among the specific issues that will be addressed under the initiative are the types of traits that should be tested for, how NIPTs should be conducted, and the potential policy changes that should be made in order to support the ethical use of such testing.
"Next-generation prenatal tests are different in ways that are psychologically, socially, and morally salient," Hastings Center President Mildred Solomon added in the statement. "Because the clinical and policy landscape into which these tests are entering is rapidly evolving, new research is needed to ensure their wise and effective use."
The Hastings Center pointed out that while NIPTs are generally recommended to women over the age of 35, the tests may be poised for use by a broader population in the near-future. Indeed, insurers have begun reimbursing for the use of the technology in average-risk pregnancy populations, and guidelines from professional societies no longer limit the use of NIPTs to high-risk populations.
The Hastings Center expects to produce a draft analysis and set of recommendations around NIPTs, which will be presented to focus groups of pregnant women and their partners. A final version will be released via scholarly publications, conference presentations, a public meeting, and a project website.