Normative inputs gained from uninformed and poorly informed opinions

Some UPI participants overestimated the influence of genomics on their identity, thereby establishing a profound connection between their genome and their true self.

It seems like a pretty good idea to me, if used properly and with clear rules attached. I can well imagine the idea. So much data are already scattered about you everywhere through the internet and the like. But there are no data about the real person you are on the inside. When every citizen has a genomic passport, people should worry less about being different because it proves that everyone is different and that no DNA is identical. People sometimes have an identity crisis because they no longer know who they are. A genomic passport would make all doubts disappear because everyone would have the truth about who we really are, next to the thoughts about who they are or who others are. (Contribution n°597, Question 3)

I would not like to know anything about my DNA. DNA contains many surprises that I would like to discover myself. Each DNA has its own information. It is like a book: you can first read the end or start from the beginning. If you read from the beginning, there are no spoilers; everything is a surprise, and you have no idea what will happen. What is left if we know everything about our lives and talents in advance? There are no more challenges to finding your talents; no more surprises if you know from the start that you are a math genius or a creative person. We are supposed to find these things out ourselves and make mistakes because we learn from our mistakes. The only exception I would make is for checking serious illnesses because if I had a fatal disease, I would want to know about it. Then I will enjoy more things that are really important to me, like friends, family, traveling, etc. (Contribution n°1015, Question 1)

The strong link between DNA and identity aligns with results from previous public engagement initiatives in which citizens were well educated (Metcalfe et al. 2018; Voigt et al. 2020; Hopkins, Kinsella, and Evans 2021; Mayeur and Van Hoof 2021). The perception of DNA as all-powerful may generate disproportionate hopes and expectations or, to the contrary, exaggerated fears and mistrust (Carver et al. 2017).

I am NOT in favor of this. Knowing your DNA and that of others will bias all the choices in your life and make life completely emotionless. Knowing your DNA is a bit like knowing the date of your death. What would become of a society whose individuals knew what their future would be like? What place will be left for the trials of life resulting from its randomness, which are sources of individual and collective enrichment? All forms of altruism are likely to disappear in the long run. The randomness of encounters will disappear: why would anyone want to build a life with someone whose DNA is at-risk? That could lead to the fragmentation of society, with the good DNAs together and the bad ones put aside. It could also lead to ideological movements of DNA purification… (Contribution n°64, Question 1)

These data limit your freedom and your future. I would not like to share my DNA data with the outside world. If I were to apply for a job, for example, they would know straight away whether I was suitable for the job or not because everything can be read in DNA. It would be terrible if someone were to finish their medical studies and then be told when they apply for a job: “Ah, but your DNA shows that you are not stress-resistant enough for this job. Sorry, we can›t hire you.” I don›t think anyone is waiting for such a moment. If the sharing of DNA data were mandatory, a privacy law should be enacted. Otherwise, there will be incidents like this in the future. (Contribution n°598, Question 2)

Although the genetic determinism reflected in these contributions is scientifically incorrect, some actors can still abuse genomic information in a deterministic manner. Those participants feared that the massive use of genomic data would create a power imbalance, rendering them vulnerable. Discrimination by for-profit actors is one of the most frequent concerns pinpointed in engagement initiatives (Middleton et al. 2016; Haeusermann et al. 2018; Dheensa et al. 2019; Middleton et al. 2019; Hopkins, Kinsella, and Evans 2021; Mayeur and Van Hoof 2021; Rivas Velarde et al. 2021), showing that distrust is widespread among the public, whether scientifically educated or not.

The scientific culture has been criticized repeatedly for its tendency to attribute public mistrust to poor literacy about science, explaining the overemphasis on education in engagement activities to gain support from citizens (Wynne 2006; Stilgoe, Lock, and Wilsdon 2014; Samuel and Farsides 2018; MacDonald et al. 2020). That can be seen as a form of epistemic injustice in which experts discredit lay knowledge when it does not align with the scientific way of thinking. Two injustices conceptualized by Fricker (2007) are here at play: the testimonial injustice that discredits someone’s word based on the prejudices attributed to that person (mistrust comes from ignorance) and the hermeneutical injustice discrediting someone’s views because the person lacks adequate vocabulary and interpretative concepts held by the dominant discourse. The science-driven approach to public engagement may severely damage the relationship between science and citizens because they do not feel taken seriously as legitimate stakeholders, offering a valuable perspective with divergent concerns, interests, needs, and values (Wynne 2006; Woolley et al. 2016; MacDonald et al. 2020; Wirz, Scheufele, and Brossard 2020; Das et al. 2022). Conversely, a more open-minded approach would enable researchers to understand the causes behind participants’ mistrust.

One question remains unanswered: Can we assume that participants would have expressed the same values, needs, or concerns if better informed? Since we could not measure the impact of the educational materials on participants’ opinions within the DNA Debate, we searched for relevant answers in the literature studying the influence of information on attitudes, values, and perceptions. Different empirical studies reached similar conclusions. Carver et al. (2017) and MacDonald et al. (2020) deconstructed the belief that more education leads to positive attitudes toward science. MacDonald et al. (2020) demonstrated that focusing on technical facts polarizes participants’ concerns, [OK] and confirmed that values significantly influence opinions about new technologies. On their side, Carver et al. (2017) stated that citizens with a higher comprehension of genetics can display higher hostility towards genetic technologies. The factors shaping perceptions and attitudes toward science are individual characteristics (such as morality, experience, trust in science, personal knowledge), information climate (media, marketing, television), and sociopolitical and cultural contexts (religion, institutions, economics) (Wirz, Scheufele, and Brossard 2020). People tend to search for and trust facts confirming and illustrating their values and worldviews, a phenomenon called confirmation bias (Ecker et al. 2022). Kuklinski et al. (2000) indicated that participants receiving nuanced information (supporting and running counter to their opinion) tend to revert to their initial position illustrating their values. Accordingly, education in public engagement has limited influence on participants’ perceptions and values, although it may impact how they express them, for instance, through relevant and correct information.

Uninformed and poorly informed opinions highlight misconceptions about genetics

The UPI opinions from the DNA Debate highlighted miscomprehensions among the participants for which more targeted education is necessary. The most worrisome one relates to their deterministic view of DNA.

I wouldn’t want my DNA to be known. I don’t want anyone to have access to it. I don’t want DNA to influence my life. I don’t want to know that I will die on October 6^th, 2069. (Contribution n°270, Question 1)

Everyone has a particular future ahead of them, which can drastically change through one specific act. If DNA determined that you would die at 37, OK, nobody wants that of course. But I think you have to accept your future and this can be made more difficult if suddenly everybody already knows how and when you will die or get sick. That’s why I believe it’s best to leave your DNA for what it is and not do any research into it because this will drastically change your future and maybe even the future of others. (Contribution n°422, Question 1)

Their deterministic conception of DNA was linked to the fear that genomic testing would render them prisoners of their genome, psychologically or socially speaking. A systematic review of the public attitudes, knowledge, and educational needs (Calabrò et al. 2020) pointed out the low level of awareness and education about genomics in general, including the influence of genetic and nongenetic risk factors on disease developments and the possibilities offered by genomic testing and research. According to a study investigating deterministic beliefs about genomics among the general public, one source of the problem lies in schools (teachers, educational material) and media that disseminate a non-negligible discourse about genetics with a deterministic background (Carver et al. 2017).

DNA is not a fixed destiny because the translation of genotype to phenotype evolves over a lifetime, highlighting the significance of prevention. Additionally, the scientific interpretation of testing results is constantly progressing, stressing the importance of conveying the uncertainties inherent in genomics, such as the possibility of receiving results of unknown significance. Education on genetics could, for instance, clarify that DNA tests provide mainly probabilistic information and that many diseases are multifactorial, even with a genetic component (Carver et al. 2017). Tackling the incomprehension of the general population would avoid disproportionate concerns or hopes, resulting in more evidence-based decision-making regarding the introduction of genomic technologies in healthcare (Carver et al. 2017; Calabrò et al. 2020; Williams et al. 2020). Education can be effective only if targeted to the needs of citizens while considering their concerns, values, and interests. The systematic review mentioned above (Calabrò et al. 2020) identified the internet, TV, newspapers, and magazines as the principal channels that citizens used to be informed about genomics, and suggested that more specific topics, such as ethical issues, could be addressed through public engagement initiatives to stimulate debates based on trusted information.

Engagement cannot be reduced to education

Alongside the enriching elements we have learned by analyzing UPI opinions from the DNA Debate, a more fundamental reason justifies why researchers must consider these opinions when engaging citizens. Engagement cannot be reduced to education, as Burgess already warned us against in 2003:

Overemphasis on the need to become “expert” in a particular application neglects the expertise and responsibility we all have as citizens to consider the effects of our actions on others, and to participate and respect the stakes of others in the kind of society we become. On the other hand, wholly uninformed discussion are unhelpful and at worst, misleading. So public engagement should make technical information available, but it must not do so at the expense of representation of the interests and perspectives of all members of society (p. 15).

Ultimately, the reason for engaging citizens lies not in their level of knowledge but in the unique input and perspective they can provide as lay stakeholders on a normative rather than epistemic level. One should be careful about drawing a sharp distinction between experts and nonexperts but consider different groups of people to have complementary expertise (Levitt 2003; MacDonald et al. 2020). In the public engagement context, citizens might be seen as experts in their lived experiences and values (Werner et al. 2020), enriching the scientific knowledge provided by genomic experts and the ethical expertise of philosophers and bioethicists. Three years of research investigating the usefulness of public engagement in the ethics of genomics governance (Tansey and Burgess 2006) underlined that the values and norms of citizens differ from those of policymakers and experts. Hence, citizens cannot be ignored even on topics for which it is difficult to establish a thorough understanding for lay people (Levitt 2003; Wirz, Scheufele, and Brossard 2020). In the context of advanced new and complex technologies like genomics, it is unsurprising that some participants remain insufficiently knowledgeable despite receiving accessible information. Considering UPI opinions would avoid rejecting the voices of those participants. It is also important to note that panels of experts do not consistently formulate guidelines for the best clinical practice based on facts and evidence but often use their personal experience and interests (Tsay 2018). Intuitive thinking is universally human (MacDonald et al. 2020).

Importantly, our findings do not state that every opinion is valuable at the same level, whether well informed, poorly informed, or uninformed. Researchers should always pay attention to conducting public engagement in a way that spreads scientifically valid, as neutral as possible, but easily understandable information. While it would not be wise to base policy on opinions that one can rebut on a factual level, it can be instructive to analyze the information citizens lack to express their thoughts correctly or the beliefs they constructed to make sense of their values, needs, and fears. The Council of Europe (2020) recently applauded public engagement that enlightens the beliefs on which citizens build their views:

It is important to know to what extent the evidence of public views will represent informed conclusions and to what extent it is the expression of underlying beliefs or values. It may also be important to know what informs these views (for example, technical knowledge or religious faith), how entrenched they are, and in what ways and for what reasons they might alter over time (p. 17).