With growing US support for personalized medicine, a look at ethical dilemmas

Sep 17, 2010

As government support for personalized medicine grows, a consumer advocate, a patient, and bioethicists explore ethical controversies. Direct-to-consumer genetic tests, privacy, targeted cancer therapies, and Henrietta Lacks are among topics in a special issue of the Hastings center Report.

Behind the high expectations raised by personalized medicine - the use of to individualize treatment, improve care, and possibly save money - a series of essays in the Hastings Center Report examines the challenges in determining what is effective; benefits and drawbacks for patients; and consumers' right to their genetic information, however imperfect. Ronni Sandroff, an editorial director of Consumer Reports, writes on controversies surrounding direct-to-consumer tests and discusses her essay in a podcast.

"The Prospects for Personalized Medicine." A roundup of recent government initiatives to promote personalized medicine, successes with genetically customized drug treatments, and quality control problems with genetic tests is given by Shara Yurkiewicz, a first-year student at Harvard Medical School.

"Personalized Medicine's Ragged Edge." How should we determine who should get expensive treatments? If there were a thick, bright line separating the minimal responders from the maximal responders, then we could allocate these treatments fairly. But the reality, explains Leonard Fleck, a bioethicist at Michigan State University, is more like a ragged edge - some people will clearly benefit a lot, some people will clearly not benefit at all, and many people will benefit somewhat.

"Personalized Cancer Care in an Age of Anxiety." To get an idea of how personalized medicine could reshape patient care in the years ahead, one need only look at how it is beginning to reshape the care of patients with cancer, writes Susan Gilbert, Hastings Center staff writer, who surveys those changes.

"A Patient's Experience." Marian Fontana, a New York author, describes her experience with genetic testing to guide her treatment for breast cancer.

"Direct-to-Consumer Genetic Tests and the Right to Know." Ronni Sandroff, editorial director, Family and Health, of Consumer Reports, appraises the young DTC industry in the wake of recent government investigations that exposed inaccuracies and other problems. She argues against having doctors as gatekeepers of genetic information and favors government regulation to insure that the DTC tests are reliable and are not used as marketing devices for unproven products.

"Wanted: Human Biospecimens." For to realize its potential, researchers will need thousands of samples of human tissue, blood, urine, and other biospecimens for genetic studies, writes Karen Maschke, a Hastings Center research scholar. But this need has raised many ethical issues around informed consent and privacy, rendered vividly by recent events, including lawsuits involving use of newborn screening blood samples for research, a legal settlement with the Havasupai Indian tribe over genetic research with their blood, and publication of the bestselling book on the "immortal cells" of Henrietta Lacks.

Explore further: Amgen misses 1Q views as higher costs cut profit

Provided by The Hastings Center

not rated yet
add to favorites email to friend print save as pdf

Related Stories

Marketing of unproven genetic tests a threat to public health

Apr 03, 2008

No mechanism currently exists to ensure that genetic tests are supported by adequate evidence before they go to market, or that marketing claims are truthful and not misleading, according to a policy analysis to be published ...

At Home Genomic Tests for Disease Risk Premature

Mar 18, 2008

The recent marketing of "at home" genomic tests for disease risk may be premature, according to Dr. Kenneth Offit, MD, MPH, Chief of the Clinical Genetics Service at Memorial Sloan-Kettering Cancer Center (MSKCC).

Discovery opens door to 'personalized' asthma therapy

Jan 17, 2008

In the last few years, “personalized medicine”— using genetic or other molecular biology-based diagnostic tests to customize treatment for a particular patient — has emerged as a powerful new tool for health care.

Recommended for you

Amgen misses 1Q views as higher costs cut profit

Apr 22, 2014

Despite higher sales, biotech drugmaker Amgen's first-quarter profit fell 25 percent as production and research costs rose sharply, while the year-ago quarter enjoyed a tax benefit. The company badly missed ...

Valeant, Ackman make $45.6B Allergan bid

Apr 22, 2014

Valeant Pharmaceuticals and activist investor Bill Ackman have unveiled details of their offer to buy Botox maker Allergan, proposing a cash-and-stock deal that could be worth about $45.6 billion.

User comments : 0

More news stories

Man among first in US to get 'bionic eye' (Update)

A degenerative eye disease slowly robbed Roger Pontz of his vision. Diagnosed with retinitis pigmentosa as a teenager, Pontz has been almost completely blind for years. Now, thanks to a high-tech procedure ...