press release: Bioethics gets personal with Hastings' consumer website and Hastings-NOVA special PBS March 28th

Bioethics gets personal with Hastings' consumer website and Hastings-NOVA special

The Hastings Center

Bioethics gets personal with Hastings' consumer website and Hastings-NOVA special

(Garrison, NY) Will genetic testing and personalized medicine change the way you think about your life? Should it? What can you really learn about your future from direct-to-consumer genetic tests–or even from whole genome scanning, which is becoming increasingly affordable? And what about your privacy: how well is your genetic information protected?
These and other bioethics issues are raised in Cracking Your Genetic Code, a NOVA special produced in association with The Hastings Center that airs on PBS on March 28, at 9 pm/8c. And the discussion continues at Help with Hard Questions, The Hastings Center's first website created for the general public. Help With hard Questions is an online community that aims to help people think through the ethical dimensions of dilemmas arising from advances in science and medicine–advances like genetic screening and personalized medicine, as well as reproductive technologies, children's mental health, and advanced illness.
"Advances in medicine and science hold tremendous promise," says Mary Crowley, Director of Public Affairs and Communications at The Hastings Center. "But they also raise new questions about such issues as sharing the results of genetic tests with family and balancing caretaking with other responsibilities

website: Choosingwisely - An Initiative of the ABIM Foundation

Choosing Wisely™ aims to get physicians, patients and other health care stakeholders thinking and talking about the overuse or misuse of medical tests and procedures that provide little benefit, and in some instances harm.

As part of the campaign, national organizations representing medical specialties are working with the ABIM Foundation to identify Five Things to Question — tests or procedures commonly used in their field whose necessity should be questioned and discussed. Consumer Reports is also working with the campaign to develop and disseminate materials to patients to help them engage their physicians in these conversations and ask questions about these test and procedures.

The "integration" of pseudoscience into medicine continues apace : Respectful Insolence (refers to CAM + discussions)

Regina Holliday is not special! | e-Patients.net (discussion Gilles Frydman Oct 5th, 2010/ACOR)

How do you rank and use medical evidence? short discussion on clinical trials

Randomized clinical trials are the gold standard ; Mixed bag of evidence to determine drug safety

from the series The Art of Oncology: "Certain Death in Uncertain Time: Informing Hope by Quantifying a Best Case Scenario"

Note: Stephen Gould's writings were extraordinarily popular died in 2002)

"Research informs us that the majority of patients with metastatic cancer desire information about their likely survival duration. The literature also recommends that prognostic information be communicated to those who request it in a manner that is meaningful and realistic, but maintains hope.....The following edited extract from Edward Kennedy’s memoir (and others) conveys the importance of trying to answer these questions....."

"...But I wasn’t willing to accept the doctor’s prognosis for two reasons. The first was my own obstinate will to carry on in the face of adversity, one of the many habits of discipline that my father instilled in me…. The second was the way the message was delivered. Frankly, it made me furious. I am a realist, and I have heard bad news in my life. I don’t expect or need to be treated with kid gloves. But I do believe in hope...."

"....As Stephen Gould published 3 years after reading that his median survival with abdominal mesothelioma was 8 months, “the median isn’t the message.”7 He argued that median survival can be both misleading and discouraging and believed few people have sufficient understanding of statistics to evaluate what the term median
really means....."