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Nancy Press

Publications and source records attributed to Nancy Press.

18 recordsLinked to original sources
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

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

Predictors of belief that genetic test information about hemochromatosis should be shared with family members.

We queried 101,951 white, Hispanic, black, Asian, American Indian (i.e., American Indian or Alaska Native in the United States and North American Indian, Metis, or Inuit in Canada) and Pacific Islander (including Native Hawaiian) adults who agreed to be genotypically and phenotypically screened for hemochromatosis as part of the Hemochromatosis and Iron Overload Screening (HEIRS) study about their views on sharing genetic test information with family members. Multiple logistic regression (adjusting for study site, age group, race/ethnicity, preferred language, gender, education group, income group, SF-36 General Health and Mental Health subscales, perceived benefits and limitations of genetic testing, and belief that genetic testing is a good idea) evaluated independent predictors of responding "Strongly Agree" or "Agree" versus "Disagree" or "Strongly Disagree" to the statement "Information about a person's genetic risk should be shared with family members". Agreement that genetic risk information should be shared with family members was high (93% in the overall sample of 78,952 who answered this question), but differed among racial/ethnic groups. Hispanics were significantly less likely to agree that genetic test information should be shared with family members (i.e., 88% versus 92% or more among all other ethnicities). The relationship of perceived limitations and benefits of testing, gender, and age group to the belief that information should be shared differed among racial/ethnic groups, with Spanish-preferring Hispanics being the most different from other subgroups.

Cross-Cultural Comparison↗
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

'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

Patient acceptability of genotypic testing for hemochromatosis in primary care.

PURPOSE: Genetic screening can enable timely detection and treatment of hereditary hemochromatosis (HH). Little is known about patient acceptability of DNA testing as compared to conventional phenotypic testing. METHODS: Within the HEIRS Study, a large primary-care screening study of HH and iron overload, we randomly assigned participants to receive brief information on either HH genotypic or phenotypic testing, and assessed the willingness to accept this test. The study was designed to recruit an equal number of African Americans and Caucasians. RESULTS: A total of 2500 participants were recruited from waiting rooms of primary care practices; 2165 participants who self-identified as African Americans and Caucasians were included in the analyses. Overall, 56% had accepted a genotypic test versus 58% for a phenotypic test. Adjusting for Field Center (FC), age, gender, race, educational attainment, global health rating, and knowledge of the test, the odds ratio of accepting a genotypic versus phenotypic test was 0.85 (95% CI: 0.71, 1.02; P = 0.078). Characteristics associated with test acceptance were age 45-64 years, female gender, Caucasian race, self-rated health less than ''very good'', and knowledge of the test. Test acceptance was associated with interest in knowing more about health (81%) and in helping family members (71%). Refusal reasons included a need to talk with a doctor (44%), concern about privacy (32%), and dislike of blood drawing (29%). CONCLUSION: In this diverse sample of primary care patients, stated acceptance of genotypic testing for HH mutations was similar to phenotypic testing for blood iron. Patient education regarding the nature of test, importance of disease detection, and privacy protection appear to be essential for achieving high rates of screening participation.

Adult↗
PubMed2004

Oregon physicians' responses to requests for assisted suicide: a qualitative study.

In 1997, the Oregon Death with Dignity Act was enacted, allowing physicians to prescribe lethal dosages of medication to competent, terminally ill patients who request them. To improve our understanding of physicians' reactions to requests for assisted suicide, we performed semistructured interviews of 35 Oregon physicians who had received requests from patients. Interviews were completed in 2000, and audiotaped, transcribed, and analyzed using qualitative techniques. Requests for assisted suicide had a powerful impact on physicians and their practices. Physicians often felt unprepared, and experienced apprehension and discomfort before and after receiving requests. Prominent sources of discomfort included concerns about adequately managing symptoms and suffering, not wanting to abandon patients, and incomplete understanding of patients' preferences, especially when physicians did not know patients well. Participation in assisted suicide required a large investment of time and was emotionally intense. Regardless of whether they prescribed or not, physicians did not express major regrets about their decisions. Requests often facilitated discussion of important issues, and many physicians felt that the process increased their confidence and assertiveness in discussing end-of-life issues with other patients. Physicians rarely sought support from colleagues; instead, they tended to discuss emotional aspects of their experiences with their spouses.

Attitude of Health Personnel↗
PubMed2004

Effects of individual and family functioning on interest in genetic testing.

OBJECTIVE: The present study reports on the important issue of how family communication and support regarding breast cancer risk affects interest in genetic testing and mental health. METHODS: Participants (n = 221) were women aged 18-74 who had at least one relative of Ashkenazi Jewish descent, no personal history of breast or ovarian cancer, and lived within 60 miles of Seattle, Wash. RESULTS: Communication about breast cancer risk was reported with very low frequency across all types of relatives. Women talked with their mothers and sisters more often than their fathers, brothers, or children. The only significant predictor of interest in genetic testing was the individual level variable of seeking social support. CONCLUSION: Social support needs might be a part of the genetic testing process.

Adaptation, Psychological↗
PubMed2003

Achieving utility with family history: colorectal cancer risk.

Family history of chronic disease is rapidly becoming a research tool for targeting participants at increased risk. Its current usefulness in clinical practice remains unknown. This paper details the possible utility and complications in using family history in a primary care setting, using colorectal cancer risk as the health issue. Where available, we cite data to support the issues that could arise. Where there are no studies, we invite further research. The potential of family history as a health improvement tool is still under review.

Colorectal Neoplasms↗
PubMed2003

Oregon physicians' perceptions of patients who request assisted suicide and their families.

In 1997, the Oregon Death with Dignity Act was enacted, allowing a physician to prescribe a lethal dose of medication for a competent, terminally ill patient who requests one. In 2000, we conducted single, semistructured, in-depth, face-to-face interviews with 35 Oregon physicians who received a request for a lethal prescription. The interviews focused on physicians' perceptions of patients who requested assisted suicide, the reasons for the request, and the reactions of their families. The interviews were audiotaped, transcribed, and analyzed using qualitative techniques. Physicians described requesting patients as having strong and vivid personalities characterized by determination and inflexibility. These individuals wanted to control the timing and manner of death and to avoid dependence on others. These preferences reflected long-standing coping and personality traits. Physicians perceived that these patients viewed living as purposeless and too effortful, and that they were ready for death. The requests, which were forceful and persistent, could occur at any point after diagnosis of the terminal illness, and were paralleled by refusal of medical interventions including palliative treatments. Many family members were reluctant to support these requests until they recognized the strength of the preference.

Attitude of Health Personnel↗
PubMed2003

Hemochromatosis and Iron Overload Screening (HEIRS) study design for an evaluation of 100,000 primary care-based adults.

BACKGROUND: The HEIRS Study will evaluate the prevalence, genetic and environmental determinants, and potential clinical, personal, and societal impact of hemochromatosis and iron overload in a multiethnic, primary care-based sample of 100,000 adults over a 5-year period. Participants are recruited from 5 Field Centers. Laboratory testing and data management and analysis are performed in a Central Laboratory and Coordinating Center, respectively. METHODS: Participants undergo testing for serum iron measures and common mutations of the hemochromatosis gene ( ) on chromosome 6p and answer questions on demographics, health, and genetic testing attitudes. Participants with elevated values of transferrin saturation and serum ferritin and/or C282Y homozygosity are invited to undergo a comprehensive clinical examination (CCE), as are frequency-matched control subjects. These examinations provide data on personal and family medical history, lifestyle characteristics, physical examination, genetic counseling, and assessment of ethical, legal, and social implications. Primary and secondary causes of iron overload will be distinguished by clinical criteria. Iron overload will be confirmed by quantification of iron stores. Recruiting family members of cases will permit DNA analysis for additional genetic factors that affect iron overload. RESULTS: Of the first 50,520 screened, 51% are white, 24% are African American, 11% are Asian, 11% are Hispanic, and 3% are of other, mixed, or unidentified race; 63% are female and 37% are male. CONCLUSIONS: Information from the HEIRS Study will inform policy regarding the feasibility, optimal approach, and potential individual and public health benefits and risks of primary care-based screening for iron overload and hemochromatosis.

Adult↗
PubMed2003

Tribal connections health information outreach: results, evaluation, and challenges.

In 1997, the National Library of Medicine (NLM), a component of the National Institutes of Health (NIH), initiated a program of intensified outreach to Native Americans, initially focusing on the Pacific Northwest in collaboration with the Pacific Northwest Regional Medical Library (PNRML). This initiative, known as the Tribal Connections Project, emphasized the establishment or strengthening of Internet connections at select Indian reservations and Alaska Native villages and related needs assessment and training. The hope was that these efforts would improve tribal access to health information available via the Internet and the Web. Phase I included sixteen tribal sites--eight in Washington, four in Alaska, two in Montana, and one each in Oregon and Idaho. Phase I results indicate that the project was successful in assessing local needs and building awareness of the Internet, forging new partnerships with and between the participating Indian reservations and Alaska Native villages and other organizations, making real improvements in the information technology (IT) infrastructure and Internet connectivity at fifteen of sixteen sites, and conducting training sessions with several hundred tribal participants across thirteen sites. Most importantly, the project demonstrated the key role of tribal community involvement and empowerment and contributed to development of an outreach evaluation field manual and the evolving concept of community-based outreach. The knowledge gained from Tribal Connections Project Phase I is helping refine and enhance subsequent NLM-sponsored tribal connections and similar community outreach efforts.

Community-Institutional Relations↗
PubMed2002

Genetic test evaluation: information needs of clinicians, policy makers, and the public.

Growing knowledge about gene-disease associations will lead to new opportunities for genetic testing. Many experts predict that genetic testing will become increasingly important as a guide to prevention, clinical management, and drug treatment based on genetic susceptibilities. As part of a Human Genetic Epidemiology workshop convened by the Centers for Disease Control and Prevention, a group of experts evaluated the evidence needed when considering the appropriate use of new genetic tests. Because new tests are likely to vary in their predictive value, their potential to direct prevention or treatment efforts, and their personal and social consequences, the task of determining appropriate use will require careful consideration of a variety of factors, including the analytic validity, clinical validity, clinical utility, and ethical, legal, and social implications of the test. Standardized formats are needed to summarize what is known and not known about new genetic tests with respect to each of these features. Following criteria for the objective assessment of test properties, reports should be structured to enable policy makers, clinicians, and the public to identify the available evidence, so that uncertainties can be taken into account when considering test use and planning future research.

Decision Making↗
PubMed2002

Genetics in primary care: a USA faculty development initiative.

The Genetics in Primary Care (GPC) project is a USA national faculty development initiative with the goal of enhancing the training of medical students and primary care residents by developing primary care faculty expertise in genetics. Educational strategies were developed for the project by an executive committee with input from an advisory committee, comprising individuals with primary care, medical education and genetics expertise. These committees identified the key issues in genetics education for primary care as (1) considering inherited disease in the differential diagnosis of common disorders; (2) using appropriate counseling strategies for genetic testing and diagnosis, and (3) understanding the implications of a genetic diagnosis for family members. The group emphasized the importance of a primary care perspective, which suggests that the clinical utility of genetic information is greatest when it has the potential to improve health outcomes. The group also noted that clinical practice already incorporates the use of family history information, providing a basis for discussing the application of genetic concepts in primary care. Genetics and primary care experts agreed that educational efforts will be most successful if they are integrated into existing primary care teaching programs, and use a case-based teaching format that incorporates both clinical and social dimensions of genetic disorders. Three core clinical skills were identified: (1) interpreting family history; (2) recognizing the variable clinical utility of genetic information, and (3) acquiring cultural competency. Three areas of potential controversy were identified as well: (1) the role of nondirective counseling versus shared decision-making in discussions of genetic testing; (2) the intrinsic value of genetic information when it does not influence health outcomes, and (3) indications for a genetics referral. The project provides an opportunity for ongoing discussion about these important issues.

Journal Article↗
PubMedDate not supplied

Risk, autonomy, and responsibility: informed consent for prenatal testing.

Why is informed consent required for prenatal testing? Consent is routinely sought, but examination of the theory behind and the implementation of informed consent for prenatal testing suggests that we need to reconceptualize both the risks and the responsibilities involved in offering and accepting such prenatal tests.

Abortion, Eugenic↗