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Ethical and policy implications of vaccinomics in the United States: community members' perspectives.

ABSTRACT: Objectives: We aimed to elucidate public values regarding the use of genomics to improve vaccine development and use (vaccinomics).Methods: Adults ≥18 years-old were recruited through social media and community organizations, and randomly assigned to one of four nested discussion groups in Boulder, CO and Baltimore, MD. Participants rated their confidence in vaccine safety and effectiveness prior to and after discussing vaccinomics. Before departing, they prioritized funding for vaccinomics versus federal priorities (vaccine safety and efficacy, new vaccines, and free vaccines) and chronic diseases (cancer, heart disease, and diabetes). Grounded Theory-influenced methods were used to identify themes.Results: Participants broadly supported vaccinomics. Emergent themes: concerns about reduced privacy/confidentiality, increased genetically based stigma/discrimination, and reduced agency to make vaccine-related decisions through genetically based prioritization. Participants supported vaccinomics' potential for increased personalization. Some participants favored prioritizing others over themselves during a vaccine shortage, while others did not. Some participants worried health insurance companies would discriminate against them based on information discovered through vaccinomics. Participants feared inequitable implementation of vaccinomics would contribute to discrimination and marginalization of vulnerable populations. Discussing vaccinomics did not impact perceptions of vaccine safety and effectiveness. Federal funding for vaccinomics was broadly supported.Conclusion: Participants supported vaccinomics' potential for increased personalization, noting policy safeguards to facilitate equitable implementation and protect privacy were needed. Despite some concerns, participants hoped vaccinomics would improve vaccine safety and effectiveness. Policies regarding vaccinomics' implementation must address public concerns about the privacy and confidentiality of genetic information and potential inequities in access to vaccinomics' benefits.

SUBMITTER: Gerber JE

PROVIDER: S-EPMC8189107 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:BACKGROUND:Non-Invasive Prenatal Testing (NIPT) is a technology which provides information about fetal genetic characteristics (including sex) very early in pregnancy by examining fetal DNA obtained from a sample of maternal blood. NIPT is a morally complex technology that has advanced quickly to market with a strong push from industry developers, leaving many areas of uncertainty still to be resolved, and creating a strong need for health policy that reflects women's social and ethical values. We approach the need for ethical policy-making by studying the use of NIPT and emerging policy in the province of Ontario, Canada. METHODS:Using an adapted version of constructivist grounded theory, we conducted interviews with 38 women who have had personal experiences with NIPT. We used an iterative process of data collection and analysis and a staged coding strategy to conduct a descriptive analysis of ethics issues identified implicitly and explicitly by women who have been affected by this technology. RESULTS:The findings of this paper focus on current ethical issues for women seeking NIPT, including place in the prenatal pathway, health care provider counselling about the test, industry influence on the diffusion of NIPT, consequences of availability of test results. Other issues gain relevance in the context of future policy decisions regarding NIPT, including funding of NIPT and principles that may govern the expansion of the scope of NIPT. These findings are not an exhaustive list of all the potential ethical issues related to NIPT, but rather a representation of the issues which concern women who have personal experience with this test. CONCLUSIONS:Women who have had personal experience with NIPT have concerns and priorities which sometimes contrast dramatically with the theoretical ethics literature. These findings suggest the importance of engaging patients in ethical deliberation about morally complex technologies, and point to the need for more deliberative patient engagement work in this area.

Project description:The United States (US) has a complex healthcare system with a mix of public, private, nonprofit, and for-profit insurers, healthcare institutions and organizations, and providers. Unlike other developed countries, there is not a single payer healthcare system or a national pharmaceutical benefits scheme/plan. Despite spending over USD 10,000 per capita in healthcare, the US is among the worst performers compared to other developed countries in outcomes including life expectancy at birth, infant mortality, safety during childbirth, and unmanaged chronic conditions (e.g., asthma, diabetes). Primary care is delivered by physicians and advanced practice providers (i.e., nurse practitioners and physician assistants) in a variety of settings including large health systems, federally qualified health centers or free clinics that provide care to the underserved, or specific facilities for veterans or American Indian and Alaska native peoples. Since 2010, primary care delivery has shifted toward providing patient-centered, coordinated, comprehensive care focused on providing proactive, rather than reactive, population health management, and on the quality, versus volume, of care. Community pharmacy comprises a mix of independently owned, chain, supermarket and mass merchant pharmacies. Community pharmacies provide services such as immunizations, medication therapy management, medication packaging, medication synchronization, point-of-care testing and, in specific states where legislation has been passed, hormonal contraception, opioid reversal agents, and smoking cessation services. There has been criticism regarding the lack of standard terminology for services such as medication synchronization and medication therapy management, their components and how they should be provided, which hampers comparability across studies. One of the main challenges for pharmacists in the US is the lack of provider status at the federal level. This means that pharmacists are not allowed to use existing fee-for-service health insurance billing codes to receive reimbursement for non-dispensing services. In addition, despite there being regulatory infrastructure in multiple states, the extent of service implementation is either low or unknown. Research found that pharmacists face numerous barriers when providing some of these services. State fragmentation and the lack of a single pharmacy organization and vision for the profession are additional challenges.

Project description:BackgroundGlobal interest and investment in close-to-community health services is increasing. Kenya is currently revising its community health strategy (CHS) alongside political devolution, which will result in revisioning of responsibility for local services. This article aims to explore drivers of policy change from key informant perspectives and to study perceptions of current community health services from community and sub-county levels, including perceptions of what is and what is not working well. It highlights implications for managing policy change.MethodsWe conducted 40 in-depth interviews and 10 focus group discussions with a range of participants to capture plural perspectives, including those who will influence or be influenced by CHS policy change in Kenya (policymakers, sub-county health management teams, facility managers, community health extension worker (CHEW), community health workers (CHWs), clients and community members) in two purposively selected counties: Nairobi and Kitui. Qualitative data were digitally recorded, transcribed, translated and coded before framework analysis.ResultsThere is widespread community appreciation for the existing strategy. High attrition, lack of accountability for voluntary CHWs and lack of funds to pay CHW salaries, combined with high CHEW workload were seen as main drivers for strategy change. Areas for change identified include: lack of clear supervisory structure including provision of adequate travel resources, current uneven coverage and equity of community health services, limited community knowledge about the strategy revision and demand for home-based HIV testing and counselling.ConclusionThis in-depth analysis which captures multiple perspectives results in robust recommendations for strategy revision informed by the Five Wonders of Change Framework. These recommendations point towards a more people-centred health system for improved equity and effectiveness and indicate priority areas for action if success of policy change through the roll-out of the revised strategy is to be realized.

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Ethical and policy implications of vaccinomics in the United States: community members' perspectives.

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