Preferences regarding genetic research results: comparing veterans and nonveterans responses.

OBJECTIVE: Communicating genetic research results to participants presents ethical challenges. Our objectives were to examine participants' preferences in receiving future genetic research results and to compare preferences reported by veteran and nonveterans participants. METHODS: Secondary analysis was performed on data collected in 2000-2004 from 1,575 consent forms signed by Mexican-American participants enrolled in 2 genetic family studies (GFS) in San Antonio: The Family Investigation of Nephropathy and Diabetes (FIND) and the Extended FIND (EFIND). The consent forms for these studies contained multiple-choice questions to examine participants' preferences about receiving their (1) clinical lab results and (2) future genetic research results. The FIND and EFIND databases had information on subjects' demographic characteristics and some selected clinical variables. We identified veterans using the Veterans Health Administration's (VHA's) centralized data repository. We compared veterans' and nonveterans' preferences using Student's t test for continuous variables and χ² test for discrete variables. A logistic regression analyzed subjects' preference for receiving their research results, controlling for other socio-demographic and clinical variables. RESULTS: The sample included 275 (18%) veterans and 1,247 (82%) nonveterans. Our results indicated a strong desire among the majority of participants 1,445 (95%) in getting their clinical lab research results. Likewise, 93% expressed interest in being informed about their future genetic results. There was no significant difference in veterans' and nonveterans' preference to disclosure of the research results (χ² test; p > 0.05). Regression analysis showed no significant relationship (p = 0.449) between the outcome (receiving research results) and veterans' responses after controlling for demographics and educational levels. CONCLUSION: Participants believed they would prefer receiving their genetic research results. Veterans are similar to nonveterans in their preferences. Offering genetic research results to participants should be based on well defined and structured plans to enhance interpretation of genetic data.

An analytical framework for contrasting patient and provider views of the process of chronic disease management.

Medical anthropologists involved in clinical research are often asked to help explain patients' "noncompliance" with treatment recommendations. The clinical literature on "noncompliance" tends to problematize only the patient's perspective, treating the provider's perspective as an uncontroversial point of departure. Explicating the articulation between provider and patient assumptions, expectations, and perceptions in managing chronic illness is an area well suited to the unique perspective of medical anthropologists. In this article we present an analytical framework for contrasting patient and provider goals, strategies, and evaluation criteria in chronic illness management, using examples from research on type 2 diabetes care in South Texas. This approach goes beyond contrasting patient and provider concepts and explanations of the illness itself and examines their contrasting views within the dynamic process of long-term care. This approach may prove especially useful for research aimed at a clinical audience, since it maintains a clinically relevant focus while giving serious consideration to the patient's perspective.

Herbs, prayer, and insulin. Use of medical and alternative treatments by a group of Mexican American diabetes patients.

BACKGROUND: Clinicians are often concerned that use of alternative treatments by Mexican American patients with diabetes competes with medical treatment. We examined the use and evaluation of alternative treatments for diabetes by a sample of these patients. METHODS: Following a descriptive qualitative design, a convenience sample of 43 low-income Mexican Americans with type 2 diabetes were interviewed. We analyzed interview transcripts for alternative treatments named, patterns of use, evaluation of those treatments, and the use of biomedical approaches. We crosschecked the results for interrater reliability. RESULTS: Herbs were mentioned as possible alternative treatments for diabetes by 84% of the patients interviewed. However, most had never or rarely tried herbs and viewed them as supplemental to medical treatments. Most said prayer influences health by reducing stress and bringing healing power to medicines. None used curanderos (traditional healers) for diabetes. Most actively used biomedical treatments and were less actively involved in alternative approaches. Statistical tests of association showed no competition between biomedical and alternative treatments, and alternative treatment activity tended to be significantly lower than biomedical. Most study participants emphasized medical treatment and only used alternative treatments as secondary strategies. Those patients very actively using alternative approaches also tended to be very actively using biomedical methods; they were using all resources they encountered. CONCLUSIONS: Traditional attitudes and beliefs were not especially important to the patients in this study and presented no barriers to medical care. For these patients, it also cannot be assumed that belief in alternative treatments and God's intervention indicate fatalism or noncompliance but instead require consideration of individual treatment behaviors.

Risk perceptions among patients and their relatives regarding prostate cancer and its heredity.

We performed a qualitative study to examine how prostate cancer (PC) patients and their spouses and relatives take into account family history when considering susceptibility to PC. Semi-structured interviews were conducted with 20 participants. All interviews were tape-recorded, transcribed and content analyzed. Patients' and spouses' views concerning the seriousness of PC were different. Wives viewed PC as a serious disease because it has affected their marital relationships; patients found PC to be less serious because it can be treated. All participants viewed PC as a male disease that can be passed on from fathers to sons. Furthermore, participants were aware of PC clustering in their families. However, this awareness did not encourage (healthy) male relatives to seek early detection. Additionally, participants perceived age, high-fat diet, and less exercise as important risk factors, while socioeconomic status, ethnic origin and a family history of PC were viewed as less important. We recommend that health educators pay special attention to these findings when planning to teach patients, spouses and their relatives about PC, its heredity and risks. Prostate Cancer and Prostatic Diseases (2000) 3, 176-185

Irreversibility of nutritionally induced NIDDM in Psammomys obesus is related to beta-cell apoptosis.

Psammomys lapses into fully fledged diabetes when maintained on a high-energy diet. Progression to diabetes has been classified into stage A of normoglycemia and normoinsulinemia (<120 mg/ml and 100 mU/L, respectively); stage B of hyperinsulinemia (100-300 mU/L) with marked insulin resistance in the face of normoglycemia; stage C of pronounced hyperinsulinemia with hyperglycemia < or =500 mg/ml; stage D at 6-10 weeks after stage C, featuring further hyperglycemia and loss of insulin. Insulin resistance expressed in Psammomys at stages B and C was demonstrated by nonsuppression of the hepatic gluconeogenesis enzyme phosphoenolpyruvate carboxykinase by the endogenous hyperinsulinemia and by the reduced capacity of insulin to activate muscle and liver tyrosine kinase of the insulin receptor. Diabetes at stage C, but not at stage D, was fully reversed to stage A by restricting the food ration of animals by half (from 14 to 7 g/day) for 10-14 days. We examined islet beta cells of Psammomys in the four stages of progression to diabetes by staining for insulin as well as for apoptosis by the terminal deoxynucleotidyl transferase biotin-dUTP nick end labeling (TUNEL) and visualizing the biotin-labeled cleavage sites. Psammomys in stage A had insulin-laden beta cells. In stage B, a hypertrophy and partial insulin depletion of beta cells was evident with negative TUNEL staining. In stage C, beta cells were markedly depleted of insulin, and their number within the islets decreased, but the TUNEL staining was virtually negative. In stage D, beta cells were markedly diminished within the islets, almost void of insulin, showing distinct TUNEL staining of beta cells. These results indicate that prolonged exposure of islets to in vivo hyperglycemia with beta-cell overtaxation induces nuclear disintegration with irreversible damage to the insulin-secretion apparatus. This precludes the return to normalcy by restricting the food intake of Psammomys. The appearance of cells with TUNEL-positive staining may serve as a marker of impending irreversibility of nutritionally induced diabetes.

Contrasting patient and practitioner perspectives in type 2 diabetes management.

Studies of self-care behaviors in the management of type 2 diabetes often focus on patient knowledge and motivation, without considering the role of practitioner orientations. Using an exploratory descriptive design, we conducted open-ended interviews with 51 type 2 diabetes patients and 35 practitioners from clinics in San Antonio and Laredo, Texas. We found critical differences between patient and practitioner goals, evaluations, and strategies in diabetes management, especially regarding such key concepts as "control" and "taking care of self". Practitioners' perspectives are rooted in a clinical context, emphasizing technical considerations, whereas patients' perspectives exist within a life-world context and foreground practical and experiential considerations. These result in very different approaches to treatment. Practitioners, presuming failed treatment indicates uncooperativeness, try to inform and motivate patients. The patients we interviewed, however, understood and were committed to type 2 diabetes self-care, but lacked full access to behavioral options due to their poverty and limited social power.