Do Tanzanian hospitals need healthcare ethics committees? report on the 2014 dartmouth/penn research ethics training and program development for tanzania (DPRET) workshop

Ethical issues are common in the global community. The shortage of human and medical resources when working with vulnerable populations requires institutional support to address the challenges that often arise in the patient-provider relationship. The 2014 Dartmouth/Penn Research Ethics Training and Program Development for Tanzania (DPRET) workshop centred on discussions about research and clinical ethics issues unique to Tanzanian healthcare providers. This article discusses some of the ethical challenges that workshop participants reported in their day-to-day work life with patients and families, such as truth-telling, disagreements over treatment plans and patient distrust of local physicians and hospital staff, among others. The Tanzanian participants recognised the need for supportive mechanisms within their local hospital environments. Further dialogue and research on the development ofinstitutional ethics committees within hospital systems is critically needed so that healthcare providers can meet their ethical and professional obligations to patients and families and address ethical conflicts that arise in a timely and productive fashion

Empirical developments in retraction.

This study provides current data on key questions about retraction of scientific articles. Findings confirm that the rate of retractions remains low but is increasing. The most commonly cited reason for retraction was research error or inability to reproduce results; the rate from research misconduct is an underestimate, since some retractions necessitated by research misconduct were reported as being due to inability to reproduce. Retraction by parties other than authors is increasing, especially for research misconduct. Although retractions are on average occurring sooner after publication than in the past, citation analysis shows that they are not being recognised by subsequent users of the work. Findings suggest that editors and institutional officials are taking more responsibility for correcting the scientific record but that reasons published in the retraction notice are not always reliable. More aggressive means of notification to the scientific community appear to be necessary.

A qualitative study of women's views on medical confidentiality.

CONTEXT: The need to reinvigorate medical confidentiality protections is recognised as an important objective in building patient trust necessary for successful health outcomes. Little is known about patient understanding and expectations from medical confidentiality. OBJECTIVE: To identify and describe patient views of medical confidentiality and to assess provisionally the range of these views. DESIGN: Qualitative study using indepth, open ended face-to-face interviews. SETTING: Southeastern Pennsylvania and southern New Jersey, USA. PARTICIPANTS: A total of 85 women interviewed at two clinical sites and three community/research centres. MAIN OUTCOME MEASURES: Subjects' understanding of medical confidentiality, beliefs about the handling of confidential information and concerns influencing disclosure of information to doctors. RESULTS: The subjects defined medical confidentiality as the expectation that something done or said would be kept "private" but differed on what information was confidential and the basis and methods for protecting information. Some considered all medical information as confidential and thought confidentiality protections functioned to limit its circulation to medical uses and reimbursement needs. Others defined only sensitive or potentially stigmatising information as confidential. Many of these also defined medical confidentiality as a strict limit prohibiting information release, although some noted that specific permission or urgent need could override this limit. CONCLUSIONS: Patients share a basic understanding of confidentiality as protection of information, but some might have expectations that are likely not met by current practice nor anticipated by doctors. Doctors should recognise that patients might have their own medical confidentiality models. They should address divergences from current practice and provide support to those who face emotional or practical obstacles to self-revelation.

Informed consent for population-based research involving genetics.

Bridging the gap between gene discovery and our ability to use genetic information to benefit health requires population-based knowledge about the contribution of common gene variants and gene-environment interactions to the risk of disease. The risks and benefits associated with population-based research involving genetics, especially lower-penetrance gene variants, can differ in nature from those associated with family-based research. In response to the urgent need for appropriate guidelines, the Centers for Disease Control and Prevention formed a multidisciplinary group to develop an informed consent approach for integrating genetic variation into population-based research. The group used expert opinion and federal regulations, the National Bioethics Advisory Commission's report on research involving human biological materials, existing consent forms, and literature on informed consent to create suggested language for informed consent documents and a supplemental brochure. This language reflects the premise that the probability and magnitude of harm, as well as possible personal benefits, are directly related to the meaning of the results for the health of the participant and that appropriate disclosures and processes for obtaining consent should be based on an assessment at the outset of the likelihood that the results will generate information that could lead directly to an evidence-based intervention. This informed consent approach is proposed to promote discussion about how best to enable potential participants to make informed decisions about population-based research involving genetics and to suggest issues for consideration by research sponsors, institutional review boards, and investigators.

Informed consent for emergency contraception: variability in hospital care of rape victims.

There is growing concern that rape victims are not provided with emergency contraceptives in many hospital emergency rooms, particularly in Catholic hospitals. In a small pilot study, we examined policies and practices relating to providing information, prescriptions, and pregnancy prophylaxis in emergency rooms. We held structured telephone interviews with emergency department personnel in 58 large urban hospitals, including 28 Catholic hospitals, from across the United States. Our results showed that some Catholic hospitals have policies that prohibit the discussion of emergency contraceptives with rape victims, and in some of these hospitals, a victim would learn about the treatment only by asking. Such policies and practices are contrary to Catholic teaching. More seriously, they undermine a victim's right to information about her treatment options and jeopardize physicians' fiduciary responsibility to act in their patients' best interests. We suggest that institutions must reevaluate their restrictive policies. If they fail to do so, we believe that state legislation requiring hospitals to meet the standard of care for treatment of rape victims is appropriate.

Disease gene patents: overcoming unethical constraints on clinical laboratory medicine.

The rapidly growing number of disease gene patents--patents that claim all methods for diagnosis of a particular genetic condition--threatens the ability of physicians to provide medical care to their patients. In the past, patented diagnostic tests were made broadly available to the medical community in the form of test kits or licenses to use the patented test. Disease gene tests, however, are being monopolized by a small number of providers. Monopolization of medical testing services: (a) threatens to restrict research activities; (b) creates unacceptable conflicts of interest; (c) may reduce patient access to testing; (d) may lead to inequitable extensions of patent terms on tests and related discoveries; and (e) grants to patent holders the ability to dictate the standard of care for testing, and to otherwise interfere with the practice of medicine. Because of the risks raised by monopolization, amendment of the patent law to require compulsory licensing of physicians providing medical services is recommended.

Patient consent for release of sensitive information from their medical records: an exploratory study.

The disclosure of sensitive information concerning mental health, drug and alcohol use, and communicable diseases requires express patient consent under federal and state laws. This paper presents the results of a retrospective medical record abstraction of hospital consent-to-treatment and release-of-information forms, examining whether the forms are present in the records, and, if so, whether they are signed by patients. The results suggest that patients who have sensitive information in their medical records or pay out of pocket for their care are less likely to consent to disclosure of their records. We discuss the implications of these results and recommend further research to understand patients' perceptions of medical confidentiality and the processes used for securing consent to hospital treatment.

Hospital consent for disclosure of medical records.

Disclosure of information clauses in general consent-to-treatment forms used by 202 large hospitals nationwide are described and mapped into a taxonomy to distinguish types of disclosures and to help structure consent documents.