Hastings Center Awarded NIH Grant for Major Project on Goals and Practices of Next-Generation Prenatal Testing

Prenatal testing is changing dramatically. With greatly expanded low-cost genetic tests – some as simple as a maternal blood test – prospective parents will soon be able to learn far more, far earlier, than ever before about their fetuses’ medical conditions and risks, and some nonmedical traits. These tests raise significant questions for doctors, patients, and health policy. What should be tested for? Are there traits that the tests should not be used to investigate? What policy changes are needed to support ethical use of these tests?

With a $1.1 million grant from the National Institutes of Health, The Hastings Center is leading a foundational ethical analysis of next-generation prenatal genetic tests that will inform clinical guidelines and create a research agenda aimed at improving policy and practice. The new three-year project will be led by Josephine Johnston, director of research at The Hastings Center, and Erik Parens, senior research scholar. Co-investigators on the project are Hastings Center research scholar Sarah McGraw  and Hastings Center president Mildred Solomon. Paul Appelbaum, a professor of psychiatry, medicine, and law, and Wendy Chung, a molecular and clinical geneticist, both at Columbia University, along with Vence Bonham, a health services and policy researcher at NIH, will join Johnston and Parens to form the project's steering committee.  

“The next generation of prenatal tests are set to offer prospective parents an enormous amount of information about the genetic make-up of their fetuses,” Johnston explains. “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.”

To consider how best to deploy these new prenatal tests The Hastings Center has recruited an international working group of experts and representatives. They include leaders of major clinical societies, clinical researchers and social scientists investigating prenatal testing, philosophers, and patient representatives.

Center News
In The Media

NPR’s “To the Point”
August 28
Nancy Berlinger interviewed on ethical behavior in the operating room.

New York Times
August 21
Nancy Berlinger interviewed about an incident of doctors behaving disrespectfully toward patients who are sedated.  

The New Yorker
August 24, 2015
Nancy Berlinger writes a letter to the editor, “Get With the Program.”  

Boston Globe
August 6, 2015
Mildred Solomon writes a letter to the editor, “Bioethicists do embrace science, but not indiscriminately.”
July 31, 2015
Mildred Solomon and Nancy Berlinger write a commentary, "Seizing a Medicare Moment to Improve End-of-Life Care." 

Health Affairs Blog
June 5, 2015
Mildred Solomon writes a commentary, “How Institutional Review Boards Can Support Learning Health Systems While Providing Meaningful Oversight.”

The New York Times
April 21, 2015
Erik Parens writes a commentary on the use of cognitive enhancers in the office.

The New York Times
January 19, 2015
A lead article in the Science section discusses Hastings Center Report articles on the ethically and legally controversial use of advance directives to enable people with dementia to hasten their death by refusing food and water.

The New Republic
November 1, 2014
Josephine Johnston co-authors an article on the risks of egg freezing.

The New York Times
July 11, 2014
A letter to the editor by Greg Kaebnick discusses humans’ relationship to the wilderness.

Roll Call
July 10, 2014
Hastings Center board member Joseph J. Fins writes a commentary, “Congress, With Help of Private Ryan, Can Save the VA.”

June 16 & 17
Nancy Berlinger and Mildred Solomon quoted in separate articles about the family dispute over Casey Kasem’s end-of-life wishes.

May 10, 2014
Josephine Johnston quoted about Long Island doctors who recommend medications to hospitals while being paid by drug companies.

May 6, 2014
Hastings Center senior advisor Rosemary Gibson looks at a small town in Maine to see the human impact of escalating health care costs on a community.

Wall Street Journal
April 28, 2014
Josephine Johnston quoted in an article about fertility treatments and multiple births, which also cites new article by Johnston, Michael Gusmano, and Pasquale Patrizio in Fertility and Sterility.

WMHT public television, Albany
April 10, 2014
Mildred Solomon interviewed on “Health Link” about the benefits of palliative care. 

March 15, 2014
Josephine Johnston quoted on federal charges against Novartis for paying doctors to prescribe pills.

Associated Press and NPR
January 1, 2014
Nancy Berlinger quoted on brain death and the case of Jahi McMath.

New York Times 
December 1, 2013
Daniel Callahan’s op-ed, “On Dying After Your Time,” is published in the Sunday Review.

October 8, 2013
Hastings Center Report case on doctors googling a patient is subject of an article.

September 18, 2013
Michael Gusmano quoted on relationship between mental illness and violence.

August 14, 2013
Tom Murray quoted about ethical questions raised by the BRAIN initiative.

Huffington Post
July 31, 2013
Hastings Center Guidelines called “a new must read resource for healthcare consumers.”

The New York Times
July 29, 2013
Nancy Berlinger quoted on dilemmas posed by pre-clinical testing for Alzheimer’s disease.

U.S. News Best Hospital Guidebook
July 12, 2013
Blair Sadler, board member and Fellow, interviewed about Fable hospital; Hastings Center Report essays cited. 

New York Times New Old Age blog
June 16, 2013
Over 65 blog post cited on why a geriatrician stopped accepting Medicare.

Huffington Post Live
June 6, 2013
Mildred Solomon, president, interviewed about pediatric lung transplants.

NPR’s Science Friday
May 17, 2013 
Josephine Johnston discusses ethical implications of new research that created the first human embryonic stem cells through cloning.

World Medical and Health Policy
March 2013
Michael Gusmano examines U.S. cancer survival statistics in light of claims that the U.S. health care system is the “best in the world.” 

Cell Stem Cell
February 7, 2013
Josephine Johnston coauthors article about absence of gamete donor consent in the NIH stem cell registry

The New York Times
January 20, 2013
Tom Murray quoted on the “arms race” in sport doping  

The New York Times
January 11, 2013
Letter to the Editor by Daniel Callahan on costs of medical care at the end of life