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Wylie Burke

Publications and source records attributed to Wylie Burke.

At least 19 recordsLinked to original sources
PubMed2007

Incorporating principles and practical wisdom in research ethics education: a preliminary study.

PURPOSE: Researchers are faced with daily ethical decisions that are subtle and nuanced. However, research ethics training has primarily focused on formal guidelines, general ethical principles, and historically noteworthy cases of research abuse, which may not prepare researchers to respond to everyday dilemmas in research. This study characterized researchers' responses to ethical dilemmas with the goal of aligning research ethics education programs with the demands of practice. METHOD: As a preliminary study, the authors conducted 23 semistructured interviews with senior researchers and research administrators engaged in research with human subjects at the University of Washington and affiliated institutions in 2004. Transcripts were reviewed for research conflicts and strategies used to resolve conflicts identified by participants. RESULTS: Participants referenced two distinct methods of reasoning when faced with conflicts: formal guidelines and practical wisdom. Formal guidelines include established goals, boundaries, and absolutes. Practical wisdom, an Aristotelian concept involving intuitions developed through experience, facilitates responses to everyday dilemmas and new situations. Developing practical wisdom requires researchers to calibrate their own intuitions about right and wrong. Three practices were reported to contribute to this development: self-reflection, sincere skepticism, and open dialogue with colleagues. CONCLUSIONS: These reflections from the senior researchers suggest a need to expand the scope of ethics education programs to include a focus on the development of researchers' pragmatic decision making in addition to the formal rules that govern research. Further research should explore effective educational and institutional strategies that can foster researchers' development in ethical decision making and conduct.

Authorship↗
PubMed2006

Recommendations for the care of individuals with an inherited predisposition to Lynch syndrome: a systematic review.

CONTEXT: About 2% of all colorectal cancer occurs in the context of the autosomal dominantly inherited Lynch syndrome, which is due to mutations in mismatch repair genes. Potential risk-reducing interventions are recommended for individuals known to have these mutations. OBJECTIVES: To review cancer risks and data on screening efficacy in the context of Lynch syndrome (hereditary nonpolyposis colorectal cancer) and to provide recommendations for clinical management for affected families, based on available evidence and expert opinion. DATA SOURCES AND STUDY SELECTION: A systematic literature search using PubMed and the Cochrane Database of Systematic Reviews, reference list review of retrieved articles, manual searches of relevant articles, and direct communication with other researchers in the field. Search terms included hereditary non-polyposis colon cancer, Lynch syndrome, microsatellite instability, mismatch repair genes, and terms related to the biology of Lynch syndrome. Only peer-reviewed, full-text, English-language articles concerning human subjects published between January 1, 1996, and February 2006 were included. The US Preventive Services Task Force's 2-tier system was adapted to describe the quality of evidence and to assign strength to the recommendations for each guideline. EVIDENCE SYNTHESIS: The evidence supports colonoscopic surveillance for individuals with Lynch syndrome, although the optimal age at initiation and frequency of examinations is unresolved. Colonoscopy is recommended every 1 to 2 years starting at ages 20 to 25 years (age 30 years for those with MSH6 mutations), or 10 years younger than the youngest age of the person diagnosed in the family. While fully acknowledging absence of demonstrated efficacy, the following are also recommended annually: endometrial sampling and transvaginal ultrasound of the uterus and ovaries (ages 30-35 years); urinalysis with cytology (ages 25-35 years); history, examination, review of systems, education and genetic counseling regarding Lynch syndrome (age 21 years). Regular colonoscopy was favored for at-risk persons without colorectal neoplasia. For individuals who will undergo surgical resection of a colon cancer, subtotal colectomy is favored. Evidence supports the efficacy of prophylactic hysterectomy and oophorectomy. CONCLUSIONS: The past 10 years have seen major advances in the understanding of Lynch syndrome. Current recommendations regarding cancer screening and prevention require careful consultation between clinicians, clinical cancer genetic services, and well-informed patients.

Adult↗
PubMed2006

Ethical issues arising from the participation of children in genetic research.

With new tools derived from the Human Genome Project, genetic research is expanding from the study of rare, single gene disorders to the evaluation of genetic contributors to common, complex diseases. Many genetic studies include pediatric participants. The ethical concerns related to pediatric participation in genetic research derive from the study designs commonly employed in gene discovery and from the power accorded to genetic prediction in our society. In both family-based studies and large studies combining genetic and other health-related data, special attention should be placed on recruitment procedures, informed consent, and confidentiality protections. If data repositories are created for long-term use, we recommend re-consent of pediatric participants when they reach adulthood. In addition, the potential for disclosure of individual results should be considered as part of the institutional review of genetic studies, taking into account the validity of research data and the potential that such data could be used in health care. The potential for genetic results to pose harms of personal and group stigma is also a consideration. Because genetic information is often accorded special power in our society, careful attention should be paid to how genetic information is collected and used in research involving pediatric participants.

Child↗
PubMed2006

Effects of counseling Ashkenazi Jewish women about breast cancer risk.

The goal of this study was to determine whether genetic counseling or psychosocial group counseling provided to Ashkenazi women can reduce breast cancer worry, cancer risk perception, and interest in having genetic testing. Women (N=211) were randomized to receive individual genetic risk counseling, to receive a group psychosocial group counseling, or to serve as a control group. The authors found that both counseling methods reduced cancer worry, lowered perceptions of breast cancer risk, and decreased interest in having genetic testing. Counseling can help women gain a more accurate perception of their risk, expose them to the benefits and limitations of genetic testing, and reduce their worry about cancer.

Adult↗
PubMed2006

Genetics as a tool to improve cancer outcomes: ethics and policy.

Genetic research is rapidly increasing the opportunities for the detection of inherited cancer risk. Clinicians and policy makers must ensure the adequate evaluation of the benefits and harms of this new area of practice, address the challenges of family-based detection of individuals at risk and develop practice guidelines and educational strategies that are responsive to rapidly changing knowledge. When the benefits of testing are well established, efforts must also be made to ensure access to genetic services for all who can benefit.

Bioethics↗
PubMed2006

Adding pharmacogenetics information to drug labels: lessons learned.

The US Food and Drug Administration approved a revised package insert for two cancer drugs to include information about the increased risk of severe adverse events owing to enzyme deficiencies caused by genetic variants. The label revisions stopped short of recommending or requiring pharmacogenetic testing prior to or following an adverse event. Despite (or because of) the lack of specific recommendations, we believe the actions taken by US Food and Drug Administration will have implications for pharmacogenetics research, clinical integration, and other policy considerations. We review the reasons behind the cautious label changes and discuss some of the lessons that can be learned from these experiences.

Antineoplastic Agents↗
PubMed2006

Ethical obligations and counseling challenges in cancer genetics.

Cancer genetics is creating new practice opportunities in medical genetics, oncology, and primary care. The ethical and counseling challenges of this new area of practice are not unique but sometimes take new form in the context of genetic risk. This article uses cases to explore the issues associated with shared family risk, including competing concerns of family members, duty to warn relatives of genetic risk, and testing of children and other relatives. The ethical obligations of clinicians start with the need to maintain competence in the face of rapidly evolving science. Clinicians should be able to identify patients within their practice who are candidates for genetic testing. When genetic susceptibility to cancer is identified, patients should be offered counseling and follow-up, with referral as appropriate, to ensure delivery of care consistent with current standards. When patients experience barriers to needed health care, clinicians should advocate for their needs. Clinicians must ensure the autonomy and informed decision-making of all members of cancer-prone families. Clinicians must also provide emotional support and accurate information about cancer risks and cancer risk reduction measures, including uncertainties. Teamwork among different specialties is important in addressing these challenges.

Adult↗
PubMed2005

The asthma consultative process: a collaborative approach to integrating genomics into public health practice.

Genomics research findings on asthma are reported with increasing frequency. As these findings are incorporated into existing knowledge of disease etiology and pathogenesis, the implications for public health practice need to be considered. In 2003, the University of Washington Center for Genomics and Public Health initiated a project to synthesize information about asthma genomics, to examine its relevance to public health research and practice, and to communicate findings to a public health practice audience. This goal was achieved through review of the scientific literature, formation of a working group, and consultations with professionals and community organizations. This paper describes the methods used to conduct these professional and community consultations, referred to as the asthma consultative process, and discusses the lessons learned from this activity.

Asthma↗
PubMed2005

'That's like chopping off a finger because you're afraid it might get broken': disease and illness in women's views of prophylactic mastectomy.

While data are accumulating on the efficacy of prophylactic mastectomy as a means to reduce breast cancer risk in high risk women, the effectiveness of the procedure depends on women's interest in undergoing the procedure. We report on women's responses to this surgical option as a prevention tool. Data derive from a multi-method study of women's interest in and understandings about genetic testing for breast cancer susceptibility. The sample comprises 246 women of varying ethnicities and familial breast cancer risk from Seattle, USA. In this paper, quantitative data are presented on the sociodemographic and risk perception correlates of degree of interest in taking a genetic test for breast cancer if prophylactic mastectomy were the only treatment option. In addition, we report results of a content analysis of women's open-ended responses to the question of whether and why they could imagine undergoing prophylactic mastectomy. Our analysis of these data benefits from a central distinction in medical anthropology between the concepts of illness and disease. We suggest that while prophylactic mastectomy may prevent the "disease" of breast cancer, it may be of little interest to women who see this surgery as itself mimicking the "illness" of breast cancer.

Breast Neoplasms↗
PubMed2005

Family history assessment to detect increased risk for colorectal cancer: conceptual considerations and a preliminary economic analysis.

BACKGROUND: Although the rationale for earlier screening of persons with a family history of colorectal cancer is plausible, there is no direct evidence that earlier assessment is either effective or cost-effective. OBJECTIVE: To estimate the clinical and economic effect of using family history assessment to identify persons for colorectal cancer screening before age 50. METHODS: We developed a decision model to compare costs and outcomes for two scenarios: (a) standard population screening starting at age 50; (b) family history assessment at age 40, followed by screening colonoscopy at age 40 for those with a suggestive family history of colorectal cancer. The analysis was conducted using the health insurer perspective. RESULTS: Using U.S. population estimates, 22 million would be eligible for family history assessment, and one million would be eligible for early colonoscopy; 2,834 invasive cancers would be detected, and 29,331 life years would be gained. The initial program cost would be USD $900 million. The discounted cost per life year gained of family history assessment versus no assessment equals USD $58,228. The results were most sensitive to the life expectancy benefit from earlier screening, the cost of colonoscopy, and the relative risk of colon cancer in those with a family history. CONCLUSIONS: The cost-effectiveness of family history assessment for colorectal cancer approaches that of other widely accepted technologies; yet, the results are sensitive to several assumptions where better data are needed. Because of the relatively high prevalence of family history in the population, careful analysis and empirical data are needed.

Adult↗
PubMed2005

Contributions of public health to genetics education for health care professionals.

With growing knowledge about the role of genetics in health, genetics education for health care professionals has taken on increasing importance. Many efforts are under way to develop new genetics curricula. Although such efforts are primarily the responsibility of health professional schools and professional societies, the public health system is an important stakeholder, and different sectors of public health have opportunities to enhance educational efforts. These include the development of authoritative information sources about the clinical utility of genetic susceptibility and pharmacogenetic tests, creation of networks that link professionals in underserved regions to educational materials and consultative backup, and sponsorship of forums for multidisciplinary discussion of controversial issues. Public health input can help to ensure an appropriate emphasis on health outcomes as new genomic tests and technologies come into use, thus helping to protect society from the social and medical costs of genetic tests with limited clinical value.

Genetic Predisposition to Disease↗
PubMed2004

Ethical issues in identifying and recruiting participants for familial genetic research.

Family-based research is essential to understanding the genetic and environmental etiology of human disease. The success of family-based research often depends on investigators' ability to identify, recruit, and achieve a high participation rate among eligible family members. However, recruitment of family members raises ethical concerns due to the tension between protecting participants' privacy and promoting research quality, and guidelines for these activities are not well established. The Cancer Genetics Network Bioethics Committee assembled a multidisciplinary group to explore the scientific and ethical issues that arise in the process of family-based recruitment. The group used a literature review as well as expert opinion to develop recommendations about appropriate approaches to identifying, contacting, and recruiting family members. We conclude that there is no single correct approach, but recommend a balanced approach that takes into account the nature of the particular study as well as its recruitment goals. Recruitment of family members should be viewed as part of the research protocol and should require appropriate informed consent of the already-enrolled participant. Investigators should inform prospective participants why they are being contacted, how information about them was obtained, and what will happen to that information if they decide not to participate. The recruitment process should also be sensitive to the fact that some individuals from families at increased genetic risk will have no prior knowledge of their risk status. These recommendations are put forward to promote further discussion about the advantages and disadvantages of various approaches to family-based recruitment. They suggest a framework for considering alternative recruitment strategies and their implications, as well as highlight areas in need of further empirical research.

Bioethics↗