Engaged genomic science produces better and fairer outcomes: an engagement framework for engaging and involving participants, patients and publics in genomics research and healthcare implementation

Genomic science is increasingly central to the provision of health care. Producing and applying robust genomics knowledge is a complex endeavour in which no single individual, profession, discipline or community holds all the answers. Engagement and involvement of diverse stakeholders can support alignment of societal and scientific interests, understandings and perspectives and promises better science and fairer outcomes. In this context we argue for F.A.I.R.E.R. data and data use that is Findable, Accessible, Interoperable, Reproducible, Equitable and Responsible. Yet there is a paucity of international guidance on how to engage publics, patients and participants in genomics. To support meaningful and effective engagement and involvement we developed an Engagement Framework for involving and engaging participants, patients and publics in genomics research and health implementation. The Engagement Framework is intended to support all those working in genomics research, medicine, and healthcare to deliberatively consider approaches to participant, patient and public engagement and involvement in their work. Through a series of questions, the Engagement Framework prompts new ways of thinking about the aims and purposes of engagement, and support reflection on the strengths, limitations, likely outcomes and impacts of choosing different approaches to engagement. To guide genomics activities, we describe four themes and associated questions for deliberative reflection: (i) fairness; (ii) context; (iii) heterogeneity, and (iv) recognising tensions and conflict. The four key components in the Engagement provide a framework to assist those involved in genomics to reflect on decisions they make for their initiatives, including the strategies selected, the participant, patient and public stakeholders engaged, and the anticipated goals. The Engagement Framework is one step in an actively evolving process of building genomics research and implementation cultures which foster responsible leadership and are attentive to objectives which increase equality, diversity and inclusion in participation and outcomes.

Disputes over Genomic Science Are Not Partisan

In the contemporary United States, most important societal disputes have become politicized, with the result that there are Republican and Democratic positions to which partisans largely adhere. Interestingly, that is not the case for societal uses of genomic science; controversies surrounding genomics are largely nonpartisan, or its uses are not even considered controversial. Chapter 3 demonstrates this unusual pattern by examining American elected officials’ unanimous support for forensic DNA databases and their silence on scientific DNA databases, the lack of partisanship in legislation and funding for genomics research, and the absence of controversy in the courts around genomics.

Genomic Politics

Genomic science is moving out of the laboratory and into societal uses: gene therapy for terrible diseases, evidence determining guilt or innocence in a courtroom, exploration of one’s racial and ethnic ancestry, prenatal testing, and much more. Genomics promises great benefits. It also entails great risks: surveillance, a revival of eugenics, the threat of bioterrorism, and the distortions brought about by understanding life as mechanically determined rather than freely chosen.

Introduction

Chapter 1 introduces four societal uses of genomic science that demonstrate its breadth, importance, and political complexity. They are race-based medicine, racial or ethnic ancestry testing, use of DNA in the criminal justice system, and prenatal gene testing and therapy. Although most people endorse the ideas of appropriate medication, finding one’s roots, correct determination of guilt or innocence, and healthy births, each of these uses of genomic science is intensely controversial. In parallel to their benefits, these uses evoke concerns about eugenics, racial essentialism, surveillance, and discrimination. This chapter depicts each use and its controversies, outlining the contours of Genomic Politics.

Genomic Science—From 2001 to Present Day: What School Nurses Need to Know

Genetic science has made remarkable advances in the 21st century. As genetic and genomic sciences continue to expand, school nurses will become thoroughly immersed in data, information, and technology. As new diseases, treatments, and therapies are discovered, school nurses will need to implement and assess best practices for the complex and medically fragile student population. This article will discuss the top 10 recent discoveries in genomic science and how school nurses can use this information in clinical practice.

Biotechnology and Wealth Creation From Plant With Healing Properties

The relevance of traditional healing in genomic science pertain to the use of specific herbal remedies which are therapeutic for the management of endemic diseases in developing and the least developed nations. Besides the therapeutic resources of the healers were discussed and in nature of their therapeutic modality was characterized. The physical, mental and social psychological model of traditional healing was developed. It was recommended that genomics specifically true sequencing could be applied to identify the phytochemical agents which are present in many of the herbs which traditional healers use. Among those herbs, those that are lethal and toxic to patients should be expunged.