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: Experts call for higher exam pass marks to close performance gap between international and UK medical graduates

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

Obese British man in court fight for surgery

Jul 11, 2011

A British man weighing 22 stone (139 kilograms, 306 pounds) launched a court appeal Monday against a decision to refuse him state-funded obesity surgery because he is not fat enough.

2008 crisis spurred rise in suicides in Europe

Jul 08, 2011

The financial crisis that began to hit Europe in mid-2008 reversed a steady, years-long fall in suicides among people of working age, according to a letter published on Friday by The Lancet.

New food labels dished up to keep Europe healthy

Jul 06, 2011

A groundbreaking deal on compulsory new food labels Wednesday is set to give Europeans clear information on the nutritional and energy content of products, as well as country of origin.

Overweight men have poorer sperm count

Jul 04, 2011

Overweight or obese men, like their female counterparts, have a lower chance of becoming a parent, according to a comparison of sperm quality presented at a European fertility meeting Monday.

User comments : 0

More news stories

Cancer stem cells linked to drug resistance

Most drugs used to treat lung, breast and pancreatic cancers also promote drug-resistance and ultimately spur tumor growth. Researchers at the University of California, San Diego School of Medicine have discovered ...

Finnish inventor rethinks design of the axe

(Phys.org) —Finnish inventor Heikki Kärnä is the man behind the Vipukirves Leveraxe, which is a precision tool for splitting firewood. He designed the tool to make the job easier and more efficient, with ...

Making graphene in your kitchen

Graphene has been touted as a wonder material—the world's thinnest substance, but super-strong. Now scientists say it is so easy to make you could produce some in your kitchen.