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In JAMA: New prenatal tests raise ethical concerns

May 27th, 2009

By Peter A. Benn and Audrey R. Chapman in the Journal of the American Medical Association (subscription required):

Benn and Chapman say noninvasive prenatal diagnosis for fetal chromosomal abnormalities are expected to be commercially available within a year. The expected introduction of such tests raises “significant ethical issues,” they say, and will require the “ill-prepared medical system to change how patients are counseled and how cases are managed.”

Among other concerns, the authors cite these:

– Women currently receiving fetal Down syndrome screening often receive only limited information prior to the screening and are rarely asked to provide informed consent. Many women are unaware that this screening may ultimately lead to questions about further invasive testing and possible termination of the pregnancy.

– The use of noninvasive testing “may be encouraged” by for-profit laboratories, insurance companies and governmental health agencies that could derive economic benefits from the use of the testing, potentially undercutting individual patient choice.

– The reduced prevalence of people with identifiable genetic disabilities in the population could “subtly alter public attitudes toward the acceptability of continuing an affected pregnancy.” This attitude shift could “diminish understanding and support for affected individuals and their families and increase the stigma associated with having a genetic disorder.”

The authors call for the public, medical professional societies, and the government to be proactively involved in shaping the future of this testing.

An excerpt:

“It is important that the US Food and Drug Administration assume regulatory authority over genetic testing. There also needs to be an objective and scientific body that could consider these viewpoints, develop codes of practice, provide patient and professional education, make regulatory recommendations, and set minimum standards for prenatal diagnosis.

In summary, noninvasive prenatal diagnosis can potentially improve the safety and efficacy of prenatal diagnosis and thereby encourage wider application. However, its use requires new approaches in genetic counseling, reassessments of the utility of related testing, and expansion of testing oversight.”

One Response to “In JAMA: New prenatal tests raise ethical concerns”

  1. Laurie Says:

    I am so glad that the Journal of the American Medical Association has included an article that discusses the ethical issues presented by prenatal testing for Down syndrome. This publication reaches thousands of doctors and I hope they read the article as I think they are uneducated in this area.

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