Evolving public views on the value of one’s DNA and expectations for genomic database governance: Results from a national survey

Abstract

We report results from a large survey of public attitudes regarding genomic database governance. Prior surveys focused on the context of academic-sponsored biobanks, framing data provision as altruistic donation; our survey is designed to reflect four growing trends: genomic databases are found across many sectors; they are used for more than academic biomedical research; their value is reflected in corporate transactions; and additional related privacy risks are coming to light. To examine how attitudes may evolve in response to these trends, we provided survey respondents with information from mainstream media coverage of them. We then found only 11.7% of respondents willing to altruistically donate their data, versus 50.6% willing to provide data if financially compensated, and 37.8% unwilling to provide data regardless of compensation. Because providing one's genomic data is sometimes bundled with receipt of a personalized genomic report, we also asked respondents what price they would be willing to pay for a personalized report. Subtracting that response value from one's expected compensation for providing data (if any) yields a net expected payment. For the altruistic donors, median net expected payment was-$75 (i.e. they expected to pay $75 for the bundle). For respondents wanting compensation for their data, however, median net expected payment was +$95 (i.e. they expected to receive $95). When asked about different genomic database governance policies, most respondents preferred options that allowed them more control over their data. In particular, they favored policies restricting data sharing or reuse unless permission is specifically granted by the individual. Policy preferences were also relatively consistent regardless of the sector in which the genomic database was located. Together these findings offer a forward-looking window on individual preferences that can be useful for institutions of all types as they develop governance approaches in this area of large-scale data sharing.

The Belgian DNA Debate: An Online Deliberative Platform on the Ethical, Legal, and Social Issues of Genomics

“…To address this concern, many contributors identified privacy protection, transparency, and control as fundamental conditions that must be met, which is consistent with values cited in previous citizens’ consultations [13, 14, 29]. Genomic databases and clinical and research programs should be governed in a participant-centred and transparent way and should, for example, allow for the removal of data or require specific permission for the reuse of data [4, 6]. Finally, contributors called for a legal framework to protect their shared genomic data.…”

“…Both participants of our study and other citizen forums were aware of the risks of data sharing. They were frequently concerned about data abuses, for instance, by employers and insurance companies [6, 21, 29, 34]. According to a Belgian survey, one-quarter of the general population worried that the genetic test results could “fall into the wrong hands” [1].…”

“…Besides healthcare services, genealogical and forensic services sometimes use genomic technologies. Consequently, everyone may likely be confronted directly or indirectly with genomics shortly [4-6].…”

Mediennutzung in Zeiten von Corona

“…▪ Die Möglichkeit und Wirklichkeit von Manipulation großer Menschenmassen wurde experimentell im Hinblick auf Emotionen [22] (n = 700 000), Kaufentscheidungen [25] (n = 3 500 000) und Wahlentscheidungen [2] (n = 61 000 000) nachgewiesen. ▪ Die Gefährdung unserer Privatsphäre ist zwar bekannt, ist aber den meisten Menschen nachweislich egal [3,31], mit Ausnahme der Deutschen [51]. Die unabhängigen Bewertungs-und Entscheidungsfindungsprozesse, welche eine Grundlage unserer Demokratie sind, können aber nur funktionieren, wenn es Privatheit gibt -auch dies wurde empirisch nachgewiesen [36].…”

“…Auch die Sorgen der Lehrerin im Hinblick auf die Entwicklung einer Sucht sind leider nur zu berechtigt, denn die Corona-Pandemie hat das Problem der Sucht verstärkt [14,21]. 3 Wurde noch bis vor wenigen Jahren immer wieder angezweifelt, dass es neben den stoffgebundenen Suchterkrankungen auch Verhaltenssüchte gibt, so sind diese (wie schon seit längerer Zeit die Glücksspielsucht) mittlerweile von der WHO als Suchterkrankungen anerkannt und auch ihre Behandlung gefordert. Leider haben Menschen mit Computerspielsucht auch ein höheres Risiko, an stoffgebundenen Süchten zu erkranken, was teilweise darauf zurückzuführen sein dürfte, dass einerseits eine allgemeine, erbliche Neigung zur Sucht beide Suchtformen betrifft und andererseits in Computerspielen nicht selten auch der Substanzgebrauch propagiert wird.…”