Freedom of Choice About Incidental Findings Can Frustrate Participants' True Preferences

Abstract

Ethicists, regulators and researchers have struggled with the question of whether incidental findings in genomics studies should be disclosed to participants. In the ethical debate, a general consensus is that disclosed information should benefit participants. However, there is no agreement that genetic information will benefit participants, rather it may cause problems such as anxiety. One could get past this disagreement about disclosure of incidental findings by letting participants express their preferences in the consent form. We argue that this freedom of choice is problematic. In transferring the decision to participants, it is assumed that participants will understand what they decide about and that they will express what they truly want. However, psychological findings about people's reaction to probabilities and risk have been shown to involve both cognitive and emotional challenges. People change their attitude to risk depending on what is at stake. Their mood affects judgments and choices, and they over- and underestimate probabilities depending on whether they are low or high. Moreover, different framing of the options can steer people to a specific choice. Although it seems attractive to let participants express their preferences to incidental findings in the consent form, it is uncertain if this choice enables people to express what they truly prefer. In order to better understand the participants' preferences, we argue that future empirical work needs to confront the participant with the complexity of the uncertainty and the trade-offs that are connected with the uncertain predictive value of genetic risk information.

Conceptualizing the Human Being: Insights from the Genethics Discourse and Implications for Islamic Bioethics

“…For example, in the research arena, genetic/genomic data may disclose information about an individual's genetic composition that is unrelated to the particular focus of the research study. The ethics of these "incidental" findings is hotly debated (Viberg et al 2016, Hofmann 2016, Costain and Bassett 2013, Kleiderman et al 2014, Gliwa and Berkman 2013, Garrett 2013, Borgelt, Anderson, and Illes 2013, Price 2013, Anastasova et al 2013, Ross and Reiff 2013, Parens, Appelbaum, and Chung 2013, Greenbaum 2014, Appelbaum et al 2014. The relevance and limitations of the concepts of "duty to rescue" and "right not to know" to incidental findings is also canvassed by many articles (Berkman, Hull, and Biesecker 2015, Zuradzki 2015, Fenwick et al 2015, Wachbroit 2015, Meagher 2015, Jecker 2015, Garrett 2015, Parsi 2015, Ulrich 2013.…”

The Right to Know: A Revised Standard for Reporting Incidental Findings

“…Reports may be in overly technical jargon, or be couched in difficult-to-understand statistical terms, or have unclear implications for one’s life, and so on. Even the choice of whether to receive incidental findings in the first place is affected by misunderstandings, variable moods, framing effects, and other problematic factors 22. Researchers should in the very least be prepared not just to state findings but to explain them in a way that could best assist in helping the participant understand them.…”

DECIDE: a Decision Support Tool to Facilitate Parents’ Choices Regarding Genome‐Wide Sequencing

“…The quality of decisions people make is influenced by the amount of unfamiliar information; by the order in which options, risks, and benefits are presented to them; and by perceptions of the importance of less common risks or benefits, which are often over-or underweighted in decision-making (Bansback et al 2014) . In situations involving uncertainty on multiple issues, it may be exceptionally difficult to make adequate decisions (Viberg et al 2015). A number of strategies have been used in developing decision aids to empirically address these issues, most recently taking advantage of interactive computer programs to tailor the decision aid and educational material to the specific concerns or issues of each individual to promote high quality decisions.…”