scholarly journals Laying Anchor: Inserting Precision Health into a Public Health Genetics Policy Course

Healthcare ◽  
2018 ◽  
Vol 6 (3) ◽  
pp. 93 ◽  
Author(s):  
Stephen Modell ◽  
Toby Citrin ◽  
Sharon Kardia

The United States Precision Medicine Initiative (PMI) was announced by then President Barack Obama in January 2015. It is a national effort designed to take into account genetic, environmental, and lifestyle differences in the development of individually tailored forms of treatment and prevention. This goal was implemented in March 2015 with the formation of an advisory committee working group to provide a framework for the proposed national research cohort of one million or more participants. The working group further held a public workshop on participant engagement and health equity, focusing on the design of an inclusive cohort, building public trust, and identifying active participant engagement features for the national cohort. Precision techniques offer medical and public health practitioners the opportunity to personally tailor preventive and therapeutic regimens based on informatics applied to large volume genotypic and phenotypic data. The PMI’s (All of Us Research Program’s) medical and public health promise, its balanced attention to technical and ethical issues, and its nuanced advisory structure made it a natural choice for inclusion in the University of Michigan course “Issues in Public Health Genetics” (HMP 517), offered each fall by the University’s School of Public Health. In 2015, the instructors included the PMI as the recurrent case study introduced at the beginning and referred to throughout the course, and as a class exercise allowing students to translate issues into policy. In 2016, an entire class session was devoted to precision medicine and precision public health. In this article, we examine the dialogues that transpired in these three course components, evaluate session impact on student ability to formulate PMI policy, and share our vision for next-generation courses dealing with precision health. Methodology: Class materials (class notes, oral exercise transcripts, class exercise written hand-ins) from the three course components were inspected and analyzed for issues and policy content. The purpose of the analysis was to assess the extent to which course components have enabled our students to formulate policy in the precision public health area. Analysis of student comments responding to questions posed during the initial case study comprised the initial or “pre-” categories. Analysis of student responses to the class exercise assignment, which included the same set of questions, formed the “post-” categories. Categories were validated by cross-comparison among the three authors, and inspected for frequency with which they appeared in student responses. Frequencies steered the selection of illustrative quotations, revealing the extent to which students were able to convert issue areas into actual policies. Lecture content and student comments in the precision health didactic session were inspected for degree to which they reinforced and extended the derived categories. Results: The case study inspection yielded four overarching categories: (1) assurance (access, equity, disparities); (2) participation (involvement, representativeness); (3) ethics (consent, privacy, benefit sharing); and (4) treatment of people (stigmatization, discrimination). Class exercise inspection and analysis yielded three additional categories: (5) financial; (6) educational; and (7) trust-building. The first three categories exceeded the others in terms of number of student mentions (8–14 vs. 4–6 mentions). Three other categories were considered and excluded because of infrequent mention. Students suggested several means of trust-building, including PMI personnel working with community leaders, stakeholder consultation, networking, and use of social media. Student representatives prioritized participant and research institution access to PMI information over commercial access. Multiple schemes were proposed for participant consent and return of results. Both pricing policy and Medicaid coverage were touched on. During the didactic session, students commented on the importance of provider training in precision health. Course evaluation highlighted the need for clarity on the organizations involved in the PMI, and leaving time for student-student interaction. Conclusions: While some student responses during the exercise were terse, an evolution was detectable over the three course components in student ability to suggest tangible policies and steps for implementation. Students also gained surety in presenting policy positions to a peer audience. Students came up with some very creative suggestions, such as use of an electronic platform to assure participant involvement in the disposition of their biological sample and personal health information, and alternate examples of ways to manage large volumes of data. An examination of socio-ethical issues and policies can strengthen student understanding of the directions the Precision Medicine Initiative is taking, and aid in training for the application of more varied precision medicine and public health techniques, such as tier 1 genetic testing and whole genome and exome sequencing. Future course development may reflect additional features of the ongoing All of Us Research Program, and further articulate precision public health approaches applying to populations as opposed to single individuals.

2020 ◽  
Author(s):  
Wei Yu ◽  
Marta Gwinn ◽  
Muin J. Khoury

AbstractSummaryWe developed a new online database that contains the most updated published scientific literature, online news and reports, CDC and National Institutes of Health (NIH) resources. The tool captures emerging discoveries and applications of genomics, molecular, and other precision medicine and precision public health tools in the investigation and control of coronavirus diseases, including COVID-19, MERS-CoV, and SARS.AvailabilityCoronavirus Disease Portal (CDP) can be freely accessed via https://phgkb.cdc.gov/PHGKB/[email protected]


2021 ◽  
Vol 13 (1) ◽  
Author(s):  
Megan C. Roberts ◽  
Alison E. Fohner ◽  
Latrice Landry ◽  
Dana Lee Olstad ◽  
Amelia K. Smit ◽  
...  

AbstractPrecision public health is a relatively new field that integrates components of precision medicine, such as human genomics research, with public health concepts to help improve population health. Despite interest in advancing precision public health initiatives using human genomics research, current and future opportunities in this emerging field remain largely undescribed. To that end, we provide examples of promising opportunities and current applications of genomics research within precision public health and outline future directions within five major domains of public health: biostatistics, environmental health, epidemiology, health policy and health services, and social and behavioral science. To further extend applications of genomics within precision public health research, three key cross-cutting challenges will need to be addressed: developing policies that implement precision public health initiatives at multiple levels, improving data integration and developing more rigorous methodologies, and incorporating initiatives that address health equity. Realizing the potential to better integrate human genomics within precision public health will require transdisciplinary efforts that leverage the strengths of both precision medicine and public health.


2016 ◽  
Vol 50 (3) ◽  
pp. 398-401 ◽  
Author(s):  
Muin J. Khoury ◽  
Michael F. Iademarco ◽  
William T. Riley

2021 ◽  
Vol 9 ◽  
Author(s):  
Pedro Elkind Velmovitsky ◽  
Tatiana Bevilacqua ◽  
Paulo Alencar ◽  
Donald Cowan ◽  
Plinio Pelegrini Morita

The field of precision medicine explores disease treatments by looking at genetic, socio-environmental, and clinical factors, thus trying to provide a holistic view of a person's health. Public health, on the other hand, is focused on improving the health of populations through preventive strategies and timely interventions. With recent advances in technology, we are able to collect, analyze and store for the first-time large volumes of real-time, diverse and continuous health data. Typically, the field of precision medicine deals with a huge amount of data from few individuals; public health, on the other hand, deals with limited data from a population. With the coming of Big Data, the fields of precision medicine and public health are converging into precision public health, the study of biological and genetic factors supported by large amounts of population data. In this paper, we explore through a comprehensive review the data types and use cases found in precision medicine and public health. We also discuss how these data types and use cases can converge toward precision public health, as well as challenges and opportunities provided by research and analyses of health data.


2020 ◽  
Vol 4 (s1) ◽  
pp. 65-65
Author(s):  
Jeffrey S Farroni ◽  
Emma Tumilty

OBJECTIVES/GOALS: Innovative educational approaches and training modalities are important for training a diverse workforce in the authentic skills needed to advance all phases of clinical and translational research. Endeavors to study and develop policies that promote the translational science spectrum are steeped in value judgments. Learning how to navigate moral ambiguity and ethical reasoning enlightens our understanding of stakeholder obligations, roles and responsibilities. Ethics education can be challenging if learners are insufficiently engaged in the necessary critical reflection. In this course, decision-making in public health is informed through the analysis of the ethical issues, developing alternative courses of action and providing justification for actions taken in response to real-world dilemmas. The course is provided to students with a variety of backgrounds (science, health, policy) in a Master of Public Health degree program. Course objective were to: 1) Identify ethical issues in public health policy, practice, and research using appropriate concepts and terms; 2) Recognize the full spectrum of determinants of health and related information needed to resolve ethical conflicts in public health policy, practice, and research; 3) Present varied and complex information in written and oral formats; 4) Assess potential solutions to ethical conflicts in public health policy, practice, and research and 5) Decide ethical courses of action for public health policy, practice, and research. We adopted an open pedagogy as a guiding praxis to inform public health ethics discourse amongst our learners. In this way, learner agency was maximized to develop course materials within a generalized framework and shared with each other through the perspectives of each individual. The goal was to not only analyze complex ethical dimensions of public health issues but also gain insights into the disciplinary lenses of one’s peers. METHODS/STUDY POPULATION: Each week was divided into two sessions, a seminar and workshop. Course instructors introduce topics in a one-hour session and then allow students to decide what information is needed for a second session where the ethical issues of the topic will be discussed. Information-gathering tasks are then distributed amongst students in areas that are not their specialty, e.g. social history to be researched by learner with a biology background. The second session then involves the reporting back of background information by each student and a discussion of the ethical issues that arise. Through this process, the ability to communicate with others in different disciplines is supported, while exploring other disciplines and then engaging in ethical discussion and reasoning. Topics were introduced during the seminar session each week over the span of five weeks: 1) global public health, 2) disease prevention & control, 3) environmental & occupational public health, 4) resource allocation & priority setting and 5) research ethics. Learners were tasked with identifying the needed information to address the ethical, policy, and research aspects of the public health question(s) presented in these seminars. Students independently submitted resources they discovered to course instructors prior to the workshop. The following session began with a workshop where learners briefly presented their findings and deliberated on specific facets of the public health issue from that previous seminar while discussing a specific case. Students were assessed on their preparation (submission of identified resources), workshop presentation and participation. Research Preparation: In each seminar, the class decided what key information would be required to support the discussion at the workshop, which revolved around a relevant case study on that week’s topic. Course instructors facilitated the groups identification of material to be researched and the delegation of tasks within the group. Each student submitted a summary document (template provided) to course instructors prior to class for their area of research related to the case. Research Presentation: At the beginning of each workshop, each student was asked to present the research work to the rest of the class so that everyone has the same information for the case study discussion. These short (5-10 minutes) presentations followed the format of the preparation summary. Participation/collaboration: Both the seminar and the workshop asked students to be active learners within the class, participating in discussion, strategizing for information-gathering tasks, presenting researched material and arguments to others, and participating in case study discussion. Participation was assessed in relation to the value of the contributions made by students. RESULTS/ANTICIPATED RESULTS: The open pedagogy allowed the learners to construct the necessary materials to discuss issues with each other and develop not only a deeper understanding of the ethical dimension of public health issues but a shared understanding of each other’s disciplinary lenses. Course feedback was generally very positive, with learners either agreeing (33%) or strongly agreeing (67%) that the course was effective overall. In asking what learners liked best about the course, some indicated the “open pedagogy learning style” and “I liked the discussion format.” The positive comments mostly highlighted the discussion format. Areas for improvement noted by the learners included wanting “a longer course to cover more topics” and that the material was covered in “too short a time frame.” Other comments included that the course “was a bit disorganized” or that “the discussions were not very structured.” While the discussions by their very nature were unstructured, there is opportunity to refine this pedagogy to find right balance of learner agency. DISCUSSION/SIGNIFICANCE OF IMPACT: The goal of this teaching method was to empower the learner with the important critical thinking skills to navigate challenging ethical dilemmas in public health they may encounter in their careers. These skills include the identification of the ethical or moral conflict(s), collecting the necessary information to examine/resolve the dilemma, think creatively about the information that is unavailable and how to discuss/disseminate information to a broad constituency. This an educational model that is easily adaptable for learners working in other areas of the translational research spectrum, e.g. basic, pre-clinical, clinical and implementation sciences.


2019 ◽  
Vol 11 (3) ◽  
pp. 275-288 ◽  
Author(s):  
G. Owen Schaefer ◽  
E Shyong Tai ◽  
Shirley Sun

Abstract As opposed to a ‘one size fits all’ approach, precision medicine uses relevant biological (including genetic), medical, behavioural and environmental information about a person to further personalize their healthcare. This could mean better prediction of someone’s disease risk and more effective diagnosis and treatment if they have a condition. Big data allows for far more precision and tailoring than was ever before possible by linking together diverse datasets to reveal hitherto-unknown correlations and causal pathways. But it also raises ethical issues relating to the balancing of interests, viability of anonymization, familial and group implications, as well as genetic discrimination. This article analyses these issues in light of the values of public benefit, justice, harm minimization, transparency, engagement and reflexivity and applies the deliberative balancing approach found in the Ethical Framework for Big Data in Health and Research (Xafis et al. 2019) to a case study on clinical genomic data sharing. Please refer to that article for an explanation of how this framework is to be used, including a full explanation of the key values involved and the balancing approach used in the case study at the end. Our discussion is meant to be of use to those involved in the practice as well as governance and oversight of precision medicine to address ethical concerns that arise in a coherent and systematic manner.


Bioethica ◽  
2021 ◽  
Vol 7 (1) ◽  
pp. 6
Author(s):  
Aikaterini A Aspradaki

The strong relationship between bioethics and public health has been put forward since the early 1970s. The HIV/AIDS epidemic, erupted in the 1980s, serves as a catalyst for the broadening of the bioethics frameworks by the inclusion of ethical issues faced in public health. From the beginning of the 21st century, public health ethics has been emerged as a discipline and has been established as a subfield of bioethics.Topics in public health ethics include, among others, the public health research, the ethics and infectious disease control, the ethics of health promotion and disease prevention, the ethical issues in environmental and occupational health, the public health and health system reform: allocation of resources, access, priority setting, the international collaboration for global public health, the vulnerability and marginalized populations, the public health genetics, the public health genomics. The COVID-19 pandemic seems to constitute an area of conceptual and practical overlapping of all the above-mentioned topics and gives huge boost to research interest for public health bioethics.This paper explains the relationship between bioethics and public health through two time periods and, in particular, the “early” 1970s- 1990s era and the2000s & 2010s that is the period of the emergence and establishment of public health ethics marked, at the end, by the COVID-19 pandemic.


2019 ◽  
Vol 57 (2) ◽  
pp. 286-289
Author(s):  
John R. Meurer ◽  
Jeffrey C. Whittle ◽  
Kelsey M. Lamb ◽  
Matthew A. Kosasih ◽  
Melinda R. Dwinell ◽  
...  

Author(s):  
Mattia Prosperi ◽  
Jae S. Min ◽  
Jiang Bian ◽  
François Modave

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