What DNA Can and Cannot Say: Perspectives of Immigrant Families about the Use of Genetic Testing in Immigration

Genetic technologies are being implemented in areas that extend beyond the field of medicine to address social and legal problems. An emerging example is the implementation of genetic testing in the family petitioning process in immigration policy. This use of genetic testing offers the potential benefits of reducing immigration fraud and making the process more efficient and accessible for immigrants, especially those without documentation. However, little is known about the positive or negative impacts of such testing on immigrant families and their communities. This study collected empirical data through family interviews to understand the experiences and attitudes of individuals who have taken a DNA test to prove a family relationship for immigration purposes. Based on study results, we present a set of recommendations to improve the processes with which DNA testing is applied to immigration cases. We argue that DNA testing might serve as a useful tool for families who lack documentary evidence of a family relationship. However, testing might also reveal sensitive information, such as misattributed parentage, that can damage relationships and cause serious harm to beneficiaries, especially children. Petitioners should be provided with adequate information to form an understanding of the DNA test and its implementation as well as the positive and negative consequences from using it, in order to carefully assess whether DNA testing will help their case. We recommend that additional protections be put in place to safeguard children from the potential impacts of misattributed parentage or disclosure of hidden social adoptions. This research provides empirical evidence to inform policy related to the use of genetic testing in immigration

IRB perspectives on the return of individual results from genomic research

Return of individual research results from genomic studies is a hotly debated ethical issue in genomic research. However, the perspective of key stakeholders—Institutional Review Board (IRB) reviewers—has been missing from this dialogue. This study explores the positions and experiences of IRB members and staff regarding this issue

Dying on one's own terms: access to care, timing of death, and effects on family members

Thesis (Ph. D.)--University of Washington, 2004Dying on one's own terms involves coordination across the personal, social, cultural, political, economic, and physical environments of dying persons, their loved ones, and care providers. It is influenced by cultural values, spiritual beliefs, and perceptions of the dying person's illness trajectory. The three papers in this dissertation address different combinations of these contextual factors that affect the feasibility of dying on one's own terms.Paper 1, a secondary analysis of the Medical Expenditure Panel Survey, evaluates policy changes in the Balanced Budget Act of 1997 (BBA 97) on home care utilization at the end of life. Results showed that home care access fell after implementation of the BBA 97. However, those with more functional impairments and less support in the home were both more likely to receive care and receive more days of service.The "Insights into Hastened Deaths" study provided qualitative data for papers 2 and 3. Paper 2 examines the timing and circumstances of hastened deaths. Twenty-six patients hastened their death at different points in time along their trajectory of illness. Those with an estimated prognosis of 6 months were 'not recognized by others as dying, but suffering just the same.'Paper 3 illuminates the critical role of family members who participated in hastened deaths. Although families often felt isolated and ill-prepared for their role, they accepted different levels of responsibility: being present at the death, mixing and administering medications, and implementing back-up plans when complications occurred. The illegal environment created barriers to obtaining quality information, care, and support, leaving families on uncertain legal and moral ground.True choices at the end of life require sophistication, organization and competence by dying persons, families and clinicians. Health care systems, laws and policies must change to promote continuity across settings and to remove barriers that hinder dying on one's own terms

Translational Genomics: Seeking a Shared Vision of Benefit

The article focuses on the benefits of translational genomics. The author notes that translational imperative is focused for areas of research like human genomics which has accompanying benefits. Relative to this, he added that genomic research has resulted to progress in the identification of genetic contributors to complex diseases and efforts on this research is likely to result to innovative therapies and new insights into prevention

Harnessing the Electronic Health Record to Actively Support Providers with Guideline-Directed Telemetry Use.

BACKGROUND: Overuse of cardiac telemetry monitoring (telemetry) can lead to alarm fatigue, discomfort for patients, and unnecessary medical costs. Currently there are evidence-based recommendations describing appropriate telemetry use, but many providers are unaware of these guidelines. OBJECTIVES: At our multihospital health system, our goal was to support providers in ordering telemetry on acute care in accordance with evidence-based guidelines and discontinuing telemetry when it was no longer medically indicated. METHODS: We implemented a multipronged electronic health record (EHR) intervention at two academic medical centers, including: (1) an order set requiring providers to choose an indication for telemetry with a recommended duration based on American Heart Association guidelines; (2) an EHR-generated reminder page to the primary provider recommending telemetry discontinuation once the guideline-recommended duration for telemetry is exceeded; and (3) documentation of telemetry interpretation by telemetry technicians in the notes section of the EHR. To determine the impact of the intervention, we compared number of telemetry orders actively discontinued prior to discharge and telemetry duration 1 year pre- to 1 year post-intervention on acute care medicine services. We evaluated sustainability at years 2 and 3. RESULTS: Implementation of the EHR initiative resulted in a statistically significant increase in active discontinuation of telemetry orders prior to discharge: 15% (63.4-78.7%) at one site and 13% at the other (64.1-77.4%) with greater improvements on resident teams. Fewer acute care medicine telemetry orders were placed on medicine services across the system (1,503-1,305) despite an increase in admissions and the average duration of telemetry decreased at both sites (62 to 47 hours, CONCLUSION: Our study showed that a low-cost, multipart, EHR-based intervention with active provider engagement and no additional education can decrease telemetry usage on acute care medicine services