Purpose: Concern over stigma as a consequence of genetic testing has grown in response to the recent increase in genetic research and testing resulting from the Human Genome Project. However, whether a genetic or hereditary basis necessarily confers a stigma to a condition remains unexamined.

Background: Advances in viral sequence analysis make it possible to track the spread of infectious pathogens, such as HIV, within a population. When used to study HIV, these analyses (i.e., molecular epidemiology) potentially allow inference of the identity of individual research subjects. Current privacy standards are likely insufficient for this type of public health research. To address this challenge, it will be important to understand how stakeholders feel about the benefits and risks of such research.Design and Methods: To better understand perceived benefits and risks of these research methods, in-depth qualitative interviews were conducted with HIV-infected individuals, individuals at high-risk for contracting HIV, and professionals in HIV care and prevention. To gather additional perspectives, attendees to a public lecture on molecular epidemiology were asked to complete an informal questionnaire.Results: Among those interviewed and polled, there was near unanimous support for using molecular epidemiology to study HIV. Questionnaires showed strong agreement about benefits of molecular epidemiology, but diverse attitudes regarding risks. Interviewees acknowledged several risks, including privacy breaches and provocation of anti-gay sentiment. The interviews also demonstrated a possibility that misunderstandings about molecular epidemiology may affect how risks and benefits are evaluated.Conclusions: While nearly all study participants agree that the benefits of HIV molecular epidemiology outweigh the risks, concerns about privacy must be addressed to ensure continued trust in research institutions and willingness to participate in research.Significance for public healthWhen molecular epidemiology is used to study HIV, it can demonstrate how HIV infections are related and how to target prevention efforts. Applying these analyses for maximal benefit in the fight against HIV would almost certainly make individuals whose data are analyzed vulnerable to discovery. However, absolute protection of this sensitive information would require that research into these methods not be done. The success of HIV molecular epidemiology will depend on finding a balance between public health and the interests of individuals living with HIV. The stakeholders interviewed in this study agreed that molecular epidemiology should be used to study HIV epidemics and transmission despite risks to privacy. However, these interviews also highlighted the difficulty of understanding molecular epidemiology and its privacy implications. For HIV molecular epidemiology to continue, privacy protections must go beyond simply masking traditional identifiers and assuming participants are informed enough to consent to the risks.

Purpose of review: HIV phylogenetic and molecular epidemiology (ME) analyses are increasingly being performed with a goal of improving HIV prevention efforts. However, ethical, legal and social issues are associated with these analyses, and should be considered when performed.Recent findings: Several working groups have recently outlined the major issues surrounding the use of ME for HIV prevention. First, the benefits of HIV ME remain unclear, and further work is needed to quantitatively demonstrate the benefits that can be expected. Second, privacy loss is an important risk, with implications of disclosure varying by the regional legal and social climate. Inferential privacy risks will increase with technological improvements in sequencing and analysis. Third, data sharing, which enhances the utility of the data, may also increase the risk of inferential privacy loss. Mitigation strategies are available to address each of these issues. Summary:HIV ME for research and public health pose significant ethical issues that continue to evolve with improving technology, increased sampling, and a changing legal and social climate. Guidance surrounding these issues needs to be developed for researchers and public health officials in an iterative and region specific manner that accounts for the potential benefits and risks of this technology.

A goal of the Precision Medicine Initiative All of Us Research Program (AoURP) is recruitment of participants who reflect the diversity of the US. Recruitment from among blood bank donors, which may better reflect the demographic makeup of local communities, is one proposed strategy. We evaluated this strategy by analyzing the results of a survey of San Diego Blood Bank donors conducted in November 2015. Whites were more likely than nonwhites to respond to the survey (7.1 percent versus 3.9 percent). However, race was not a significant predictor of interest in participating in precision medicine research. Using census data linked to donors' ZIP codes, we also found that people who indicated interest in research participation were more likely to come from regions with higher educational attainment. Although blood banks represent a viable recruitment strategy for AoURP, our findings indicate that bias toward inclusion of whites and more highly educated people persists.

BackgroundDespite broad consensus on the importance of community and stakeholder engagement (CSE) for guiding the development, regulation, field testing, and deployment of emerging vector control technologies (such as genetically engineered insects), the types of activities pursued have varied widely, as have the outcomes. We looked to previous CSE efforts for clarity about appropriate methods and goals. Our analysis yielded a typology of CSE, and related vocabulary, that describes distinctions that funders, organizers, and scholars should make when proposing or evaluating CSE.MethodsWe compiled available formal documentation of CSE projects, starting with projects mentioned in interviews with 17 key informants. Major features of these examples, including the initiators, target groups, timing, goals, and methods were identified using qualitative coding. Based on these examples, subcategories were developed for a subset of features and applied to the identified cases of CSE in the documents. Co-occurrence of subcategorized features was examined for patterns.ResultsWe identified 14 documented examples CSE projects, which were comprised of 28 distinct CSE activities. We found no clear patterns with respect to timing. However, we found that grouping examples according to whether initiators or targets could enact the immediate desired outcome could help to clarify relationships between goals, methods, and targets.ConclusionBased on this analysis, we propose a typology that distinguishes three categories of CSE: engagement to inquire –where initiators are empowered to act on information collected through engagement with target groups; engagement to influence –where initiators engage to affect the actions of already-empowered target groups; and engagement to involve –where initiators engage to delegate authority to target groups. The proposed typology can serve as a guide for establishing the goals, identifying appropriate methods, and evaluating and reporting CSE projects by directing attention to important questions to be asked well before determining who to engage and how.