Advancing Ethical Research Conference - December 2010

Comments | Decisions at the end of life: have we come of age? full free access - open for commentary

Decisions at the end of life: have we come of age?

Linda Emanuel and Karen Glasser Scandrett

BMC Medicine 2010, 8:57doi:10.1186/1741-7015-8-57

Blog addressing educational, research and genetics needs in ovarian cancer/related populations

(Commentary) Sandi Pniauskas (19 October 2010) Ovarian Cancer and Us
Congratulations to the authors for addressing the issue of changing values and needs of patients at the close of life. Most North American studies on this topic err in their original suppositions regarding the preferred place of death. Generally the focus has been institutional and cost based as opposed to the values and ethics of yes, human dignity in dying. Specific to the needs of oncology patients/families, it is often disturbing to view reports asking citizens where they wish to die when we should know and understand that this answer cannot be of any value until those patients and families are 'in the moment'. The moment-to-moment changes in physical and emotional changes in cancer patients/families and all of the psycho-physio changes require that our systems adapt. Numerous real life examples of institutional/provider interference in the wishes of the dying are disturbingly unconscionable. The question which needs to be addressed is: 'Who's on 'first'?" Having witnessed circumstances where best practices were not followed in favour of cost analyses, we have to ask ourselves who will say no to money before suffering?
Competing interests
ovarian cancer survivor, Lynch Syndrome

Incidentally… avoiding the problem of incidental findings (Practical Ethics)

"A new study from the Mayo clinic in the United States points to a frequent           problem in certain types of medical research. When healthy volunteers or patients with a given condition take part in research studies they may have brain scans, CAT scans, blood tests or genetic tests that they wouldn’t otherwise have had. These tests are not done for the benefit of the individual, they are designed to answer a research question. But sometimes, quite often according to the authors of this new study, researchers may spot something on the scan that shouldn’t be there, and that could indicate a previously undiagnosed health condition. These ‘incidental findings’ generate an ethical dilemma for researchers....."cont'd

Research integrity: Sabotage! : Nature News

Target Cancer - New Drugs Stir Debate on Basic Rules of Clinical Trials - NYTimes.com

Practical Ethics: Religion makes a difference to end-of-life decisions

Research Ethics Law Blog

Medicine, Health Care and Philosophy A European Journal Editorial: The language of medicine and bioethics

"...The contributions in this section clearly show the new stage in the development of global bioethics, with an increasing body of documents, guidelines, publications at the level of international law. The language of human rights is becoming the new language of bioethics."

Clinical Trial Participants Are There Willingly - in Public Health & Policy, Clinical Trials

The culture of faith and hope. Patients' justifications for their high estimations of expected therapeutic benefit when enrolling in early phase oncology trials (abstract)

BACKGROUND:
Patients' estimates of their chances of therapeutic benefit from participation in early phase trials greatly exceed historical data. Ethicists worry that this therapeutic misestimation undermines the validity of informed consent.

CONCLUSIONS:
Expressions of high expected therapeutic benefit had little to do with reporting knowledge and more to do with expressing optimism. These results have implications for understanding how to obtain valid consent from participants in early phase clinical trials.

full access: Essay Beneficent Persuasion: Techniques and Ethical Guidelines to Improve Patients’ Decisions

recap/full free access: Ethical Dimensions in Sciencewise-ERC (UK)

Framework Needed for Research Ethics Review During Public Health Emergencies

Note: discussion with particular reference to SARS (2003).

blog author's opinion: the most interesting/important comment in the article might be the following, as below. The larger question is the resulting action.

"Provide guidance and education on the important differences between public health research and practice to foster consistency in application of the differences and on how to recognize when projects proposed during emergencies cross the line from practice to research."

JCO -- Early Release CORRESPONDENCE Accrual Strategies for Cancer Genetics Research: Blurred Boundaries (ethics)

CORRESPONDENCE 
Accrual Strategies for Cancer Genetics Research: Blurred Boundaries

Daniel Rayson and Karen A. Gelmon JCO published online May 17, 2010, DOI:10.1200/JCO.2010.29.0759 [PDF]  

TO THE EDITOR: 

Metcalfe et al1 describe the incidence of BRCA1 and BRCA2 founder mutations in an unselected group of Ashkenazi Jewish women, with an astounding 2,000 women enrolled within 14 days of an article appearing in one of Canada’s most respected newspapers. Given the overwhelming interest amongthe target population, one might ask exactly what information prompted such an overwhelming response. The article in question was published on the front page of the Toronto Globe and Mail (Saturday May 24, 2008) with a large-font headline reading: “Cancer test a genetic crystal ball for Jewish women.” The first line in the piece stated: “For the first time in Canada, Jewish women will be offered the chance to alter their genetic destiny by taking a test…” a patently untrue and sensationalistic statement, given that presymptomatic BRCA1 and BRCA2 mutation testing, including Ashkenazi Jewish founder mutations, have been available for many years through medical genetics services nationwide." "The study by Metcalfe et al has accentuated these concerns and should serve as a basis for additional discussion in the oncology and
medical genetics communities regarding appropriate methodologies or recruitment to clinical investigations in cancer genetics."

Response to D. Rayson et al - re: Correspondence - Accrual strategies for cancer genetics research: blurred boundaries (ethics)

Correspondence: Narod/Metcalfe:

"If Drs Rayson and Gelmon1 are under the impression that we
have influence over how the Globe and Mail2 chooses to present its
news items, they are mistaken—perhaps their comments should be
addressed to the Globe Editorial office. We too are frustrated by the
incessant optimism of the media when they enter into the realms of
genetics or oncology—each gene discovery ineluctably will lead to a
treatment of a devastating genetic disease, each new molecule is a
target for a new cancer drug—but we suppose that unfettered optimism
is good for the newspaper business and is included in the price
we pay for freedom of the press...."

If the opinions of Drs Rayson and Gelmon are representative of the medical communities of Nova Scotia and British Columbia, then it is unlikely that populationbased genetic screening for Jewish women will be introduced in those provinces any time soon."

REFERENCES
1. Rayson D, Gelmon KA: Accrual strategies for cancer genetics research:
blurred boundaries. J Clin Oncol doi: 10.1200/JCO.2010.29.0759
2. Cancer test a genetic crystal ball for Jewish women. Toronto Globe and
Mail, Saturday May 24, 2008
3. Metcalfe KA, Poll A, Royer R, et al: Screening for founder mutations in
BRCA1 and BRCA2 in unselected Jewish women. J Clin Oncol 28:387-391, 2010
DOI: 10.1200/JCO.2010.29.1146; published online ahead of print at
www.jco.org on May 17, 2010

Public Perceptions of Ethical Issues Regarding Adult Predictive Genetic Testing

"Audience members emphasized public education and access to information regarding potential choices, which was different from the emphasis on informed consent and other ethical issues prominent in the literature. Members of the general public emphasized ethical issues that were different than those identified by experts and patients. It is essential that members of the public be included in complex and controversial public policy decisions."

Ethics committees for biomedical research in some African emerging countries: which establishment for which independence? A comparison with the USA and Canada

Ethics committees for biomedical research in some African emerging countries: which establishment for which independence? A comparison with the USA and Canada

Dignity: not such a useless concept -abstract- Journal of Medical Ethics

The ethics of dietary supplements and natural health products in pharmacy practice: a systematic documentary analysis

2010 abstract Teaching Pelvic Examinations Under Anaesthesia: What Do Women Think? U of Calgary

Note: This issue of pelvic exams while under anasethesia has been explored in the research in the past   (click on 'read more' to see viewers comments)

Please take the poll and add your views on this issue.............................................