Defining the Scope of Public Engagement: Examining the “Right Not to Know” in Public Health Genomics

Abstract

In this article, we explore the concept of a "right not to know" on a population rather than individual level. We argue that a population level "right not to know" is a useful concept for helping to define the appropriate boundaries of public engagement initiatives in the emerging public health genomics context.

Genomics England’s implementation of its public engagement strategy: Blurred boundaries between engagement for the United Kingdom’s 100,000 Genomes project and the need for public support

“…Avard et al (2010) note, 'there is confusion about what is meant by public involvement, as it can have many different meanings along a continuum that ranges from low levels of communication to higher levels of involvement' (p. 511). Allen et al (2014) also note there is confusion as to how public engagement should occur, the appropriate degree of involvement, the goals that involvement should seek to achieve, whom 'the public' includes, what methods of involvement should be used, and how the success and utility of involvement should be assessed. (p. 13) This is not surprising given the US National Academy of Sciences' recent 2016 report Communicating Science Effectively, which notes that science communication is complex, context and audience specific (National Academies of Sciences, Engineering and Medicine, 2016).…”

Civil society stakeholder views on forensic DNA phenotyping: Balancing risks and benefits

“…Indeed, evidence is emerging on the beneficial impact of public engagement strategies [18], which are seen to empower members of the public to play a role in shaping current or future research or governance practices [19]. Given this, calls for engagement with stakeholders and the wider public specifically in the area of genomic technologies more broadly [1,[20][21][22] and particularly in the forensics arena [23][24][25][26], have been particularly prominent, while other authors have called for caution about engagement strategies and practices that may turn out to be tokenistic or merely symbolic. Engagement strategies that serve the primary purpose of granting legitimacy to decisions that experts and other elites have taken would be highly problematic, not only in that they reduce trust in public engagement [27], but also in that they are disrespectful of the stakeholders and publics that participated in such engagement.…”

From Genetics to Genomics: Facing the Liability Implications in Clinical Care

“…Once the laboratory has reported an incidental finding with health implications for the patient, the clinician is obligated to offer disclosure of that finding to the patient and obligated to manage the finding in keeping with the standard of care (either directly or through appropriate referral). Patients may decline to receive the finding, exercising what the ethics literature calls the “right not to know.” 85 However, there is controversy about the scope of that right, 86 and a clinician whose patient declines to know about a pathogenic finding that warrants clinical intervention or heightened surveillance faces a difficult situation that may warrant seeking ethics advice and legal counsel.…”