ABSTRACT
BACKGROUND: The practice of biorepository-based genetics research raises questions related to what ethical obligations researchers have to their participants. It is important to explore and include the thoughts of current biorepository participants as we move forward with this type of research. METHODS: Thirty participants (17 cancer patients, 7 cancer-free controls, and 6 relatives) were drawn from the Northwest Cancer Genetics Registry and participated in qualitative interviews lasting between 45 and 90 min. Topics explored in this study include which types of genetic test results participants of large biorepositories expect and would like to receive from research analyzing their samples, as well as thoughts on best practice for conducting this type of research. RESULTS: Cancer cases, controls, and first-degree relatives have differing views on what results they would like to receive from biorepository-based research. Participants across all groups attempted to balance the costs and benefits of returning individual research results. DISCUSSION: In the wake of precision medicine, it is important to describe the range of ways participants in large biorepositories both think and talk about the utilization of their specimens for genetics research.
Subject(s)
Access to Information , Genetic Research/ethics , Genetic Testing/ethics , Neoplasms , Precision Medicine , Access to Information/ethics , Access to Information/psychology , Adult , Cost-Benefit Analysis , Female , Humans , Male , Neoplasms/genetics , Neoplasms/psychology , Precision Medicine/economics , Precision Medicine/methods , Precision Medicine/psychology , Qualitative Research , Truth Disclosure/ethicsABSTRACT
BACKGROUND: Chronic pain patients often have comorbidities, including social habits such as tobacco abuse, they use to cope with pain states. This study tested the hypothesis that physician activism, communication, and interest in smoking cessation can reduce or eliminate tobacco use. METHODS: We developed a survey to evaluate patients' smoking habits and to determine if active physician participation changed these habits. RESULTS: We surveyed a total of 112 patients. Of the 56 smokers, 59% reported they had previously tried to stop. Smokers initially reported smoking 25.5 cigarettes per day for an average of 18.4 years. After receiving monthly physician messages regarding smoking, 51 of the smokers (91%) reported a reduction. These patients reported an average of 7.2 cigarettes smoked per day. Of the smoking patients, 79% indicated that they were influenced to reduce or stop smoking at the clinic, and 86% recalled that they heard specific statements from their doctor in the clinic. After reducing the number of cigarettes smoked, patients reported breathing better (68%), feeling better (66%), and experiencing less pain (34%). CONCLUSION: Physician influence correlated with smoking reduction in this study.
