Mogen wetenschappers 'Skin in the game' hebben?

NCOH, Wageningen,10 December 2021
Ineke Sluiter, President Royal Netherlands Academy of Arts and Sciences

Let me begin by congratulating the NCOH – which includes the KNAW as an associated organization, so I realize this is a form of self-congratulation – on your fifth anniversary. In these five years, the blossoming One Health field has only gained in importance, and the theme keeps resonating in unexpected corners, as when a couple of days ago two Antwerp hippos, unusually well-equipped for developing runny noses, were diagnosed with covid. Apart from One-Health-related activities of KNAW members or researchers from KNAW research institutes, our academy is currently also working on an advisory report on the topic of Planetary Health, under the chairmanship of Johan Mackenbach.

The One Health approach has once again proven not only its value, but its inevitability in the covid pandemic. Not only has the medical sector been crucial in the rapid analysis and attempts at containment of the disease, but the development of multiple effective vaccines within a year has rightly been considered a triumph of science. Trust in medical science has almost become a proxy for trust in science in general. ‘Why is trust in science declining?’, an interviewer asked me recently, and she wasn’t the first one either. Truth is: it isn’t! And hasn’t been! Trust within the Netherlands, as in many other countries, has risen during the pandemic, as shown by research of the Rathenau institute. They found that science is still the social institution that on average inspires most trust in the general public, with higher grades than the media, or politics. But still the question posed by the journalist should give us pause. Why did she somehow get the impression that trust in science is declining?

If we look below the surface, several points are important. First of all, while trust in general has gone up, some groups have reported a decline. And interestingly, higher and lower trust are inspired by the same thing: the rapid development of the vaccines. 24% of respondents was impressed by the breakthrough, 16% thought it was iffy. A second point, is that trust in science can vary depending on the topic. For example, although there is a general correlation between education level and trust in science, the Netherlands has a relatively high percentage (although still only 5%) of highly educated citizens, who do not equally extend their trust in science –which they have-- to all areas of knowledge and life: climate, yes, vaccination, no. It is not religious beliefs that are the best predictor of rejection of science, but spirituality. Highly educated spiritual city-dwellers are among those resisting vaccination.

The question of the interviewer may have been inspired by the noticeable societal unrest created by the covid measures. However, the highly diverse group taking part in demonstrations should not all be dismissed as covid-deniers or anti-vaxxers or ‘wappies’ (in Dutch).iv Nor are such demonstrations ‘antiscience’. If anything, they are anti-policies or anti-politics. Minority viewpoints need to be heard, but at the same time they have been getting disproportional attention in the media. This may create an impression among members of the general public that while they themselves trust science, trust in general is declining. So the upshot is that while medical science has had to shoulder a great responsibility to solve the health crisis of the pandemic, they are also the focus of attention for issues of trust. A fact of life, and an additional responsibility which I know is taken very seriously in the field.

One factor that demonstrably affects trust negatively, is when independence seems in doubt. Independence is equally important for the academic freedom of the researcher and for trust in science. And independence is especially believed to be impacted where outside funding plays a role, which may even prompt conspiracy theories. v There is no need to spell it out: the collaboration between academia, the pharmaceutical industry, and investors is problematic in the eyes of the general public. And it is unfortunate that this general unease is easily fed by incidents: they tend to be ‘sticky’, have a high salience, and can unduly impact general trust.

The medical sector of course fully acknowledges the importance of independence. But the general public is not aware of the debates involved and the massive amount of work that is being done, for instance in designing rules, protocols, and codes of conduct. And in developing responsible and effective forms of cooperation between all stakeholders, such as Health RI, FAST, or the work of the Ambassador Life Science and Health, Clemence Ross-van Dorp. They are evidence of a solid concern within the discipline to defend and safeguard its own integrity, the interests of the patients, and our responsibility to serve society by making the results of scientific research effective where it matters. In that latter context, I am particularly proud of the recent KNAW report by a committee chaired by Jaap Verwey on the efficient development of medicines. vi However, something else is needed for the general public to understand the demands imposed by society itself, the dilemmas caused by those demands, and the ways in which those dilemmas can be negotiated. It is one of the strategic priorities of our Academy to feed and enrich public understanding of science: here is a topic where that seems necessary.

Let me begin by boldly saying that scientists, like all people, are in general trustworthy.viii In a report entitled ‘Good science, a vision from within’ (‘good science’ in the double sense of ‘of high quality’ and ‘morally good’) the authors for once focus on what scientists themselves (including two medical disciplines) see as the positive heart of their work.ix Taking an approach based on empirical ethics and ethnography, the researchers paint a picture of science as a ‘social and learning practice, characterized by commitment and drive to understand or improve an aspect of our world’. An important finding is that scientists across disciplines are constantly engaging in ‘an everyday ethics’ of figuring out the right thing to do. This happens through dialogue within the work place, and it frequently involves concrete dilemmas. However many codes of conduct we design, dilemmas will always remain.They need to be sorted out by discussion among peers. We can serve public debate by being clearer about those dilemmas and our process of dealing with them.

Here is one example. Universities nowadays have added a ‘third mission’ to their core business of teaching and research: the third mission is to ensure that the knowledge produced by our researchers benefits society. Our researchers are encouraged to engage directly in solving societal challenges or otherwise enrich societal debate. The general principle is a good one and goes for all disciplines. Knowledge utilization, or valorization, should be broadly defined. In fact, sending well-trained graduates into society is one of the strongest ways in which we create added value. However, the general principle should not make us buy into the rhetoric of the latest pamphlet by the ‘Universiteiten van NL’. The pamphlet is all about increasing national earning power-- ignoring other types of value-- through startups, scale-ups, and unicorns, the kind of business enterprise valued at over 1 billion on initial public offering (IPO), or stock launch. But of course societal relevance may very well clash with profitability.x The hyperbolic rhetoric of the pamphlet suggests perverse expectations, conflicts with core values of academia, and puts undue pressure on our researchers.

A much more sensible approach is represented by another recent report by the Rathenau institute: ‘Between invention and challenge. on the relationship between universities, start-ups and society’, in which they correctly identify the different raisons-d’être of the stakeholders and the issues they entail. Universities are invaluable because of their independence. Companies seek to maximize profits. Society is susceptible to all kinds of political processes. It may be important that universities support spin-outs and entrepreneurship (and this may even benefit their core business of teaching and unfettered, 3 researcher-driven research), but there are serious areas of tension: the division of profits, devising forms of support without creating conflicts of interest, the careful selection of start-ups supporting a genuine societal interest, and the issue of double appointments of researchers at universities and in start-ups. Transparency is key, and the main thing to protect is academic independence.

The third mission is real, it is important, and it will often involve public-private cooperation. Medicine development in particular is something that we need and want, but that will never be funded of fundable by public money. So the question is: does the general public realize that we require of our scientists that they try to bring their results to fruition, and that there is no other way than the kind of collaboration with the pharmaceutical industry that is often frowned upon and disparaged so superficially and easily? There is nothing wrong with an ecosystem in which important goals are shared (finding cures for patients), while other goals are not: entrepreneurship, including making money, is a completely acceptable goal for pharma, scientific breakthroughs and progress is what drives scientists. The differences are clear: academic scientists involved in fundamental research are not entrepreneurs. They don’t work at their own expense and risk. If they have tenure, they have good salaries, vacation days, health insurance. They make their discoveries in publicly funded labs, with publicly funded materials and equipment. There is no reason why they should personally benefit in a disproportional way, other than through scientific recognition. There may be such a thing as ‘proportional’ benefits for inventors: we also want to retain good researchers in our universities as academic leaders and teachers of the next generation of researchers. But how to find the balance?. This is exactly the kind of debate among peers on what is the right thing to do that I was referring to earlier. Transparency and communication with society at large are key. On the other hand, there is also no reason why pharma should benefit disproportionally from publicly funded discoveries. To channel profits back into research is desirable and reasonable.xi How, to what extent, under what conditions of retained independence is again a matter of ethical negotiation.

It is relatively clear at which point academic freedom and independence are at risk. A scenario I was offered repeatedly is this: we cannot develop medicines without collaboration with pharmaceutical industry. This is unproblematic. There is a natural progression from fundamental research, to initial production, to clinical trials. Many parties have devised constructions by which pharma is paying, as is reasonable, for data, but in which scientists and UMC doctors are in the lead and independent where it matters. However, a next step in the same scenario is where a start-up also needs investors, and the investors require that researchers have ‘skin in the game’. Skin in the game refers to the fact that a party standing to benefit from success, will also suffer the negative consequences of failure. Nassim Taleb points out the many advantages of binding a party in this way: it will increase commitment for fear of losses of some significant kind. In our case, from the perspective of the investors, the researcher must be financially involved in order to commit him or her, since at this point of the development process, the intellectual powers of the researcher are the main asset.

This ‘skin in the game’ is the kind of discourse that belongs to the world of finance, business, gambling, politics: not necessarily preferred analogues for academia. There may be a potential appeal to the toughness of this talk and the social group (not scientists!) routinely engaging in it. But it belongs to a world in which the only criterion for success is money or power.xiii Make no mistake. The corollary of skin in the game is loss of independence. And here we’re back in the heart of the Rathenau analysis. This is the conversation that needs to be conducted with the investors, with our peers, and with the general public. There is a good reason why scientists are not entrepreneurs: our independence is at the core of our academic work. I applaud the colleagues with whom I have spoken who are clear about where to draw the line. Going over to the business side entirely is a clear and defensible choice. But if we choose to remain on the academic side of things, we choose independence. This has consequences for the way in which we organize the still necessary collaboration with pharma and investors. It can be done, and it is being done.

‘Yes, but’, the public may object, ‘how about conflicts of interest. Aren’t they an automatic consequence’? Well, there are certainly potential conflicts of interest, but what may not be generally understood is that the real question is how those are managed. For unless we want to eliminate expertise, we will always encounter potential conflicts of academic interest: if someone is an expert, he or she will be invited to relevant advisory positions, for instance, and at some point – but what is that point – the accumulation may become problematic. In whose views? No rule may technically be violated. It is always the researcher him- or herself, who will have a sense of how all their activities cohere. Here, as elsewhere, transparency is the only solution. Outside activities are usually not all taken up at the same time. Since full disclosure is necessary and compulsory, and many academics would have to do this on several websites, it may be useful to start a central register for disclosing and reporting all outside activities. This reduces the risk of administrative lapses, at least within the Netherlands. It would be desirable if the report included a narrative detailing how the combined activities can be managed without actual conflicts of interest occurring.

I have sketched two dilemmas, familiar to you, but little understood or brought up in public debate or in the media: one concerns the express requirement that researchers help fulfill the third mission of their academic institutions, which can only be done through active collaboration with other stakeholders in the field, including the pharmaceutical industry and investors, but which creates a difficult tension with the core academic value of independence – this is one area where researchers are constantly negotiating ‘the right thing to do’ in the work place, like the report on ‘good science’ suggested. On this point the general public needs more insight in the interplay of considerations. The second dilemma concerns actual, potential, and perceived conflicts of interest within academia, which happen to be highly correlated with the presence of expertise. Here, too, we need more societal awareness that potential conflicts of interest are not necessarily a problem. The question is how to manage them, not to eradicate expertise. The solution is transparency, full disclosure, and competent management when an actual issue arises.

There is also a third area, in which public understanding of medical research could be improved: the position of the patient. The particularly intense public ethical scrutiny of medicine is due precisely to the fact that patients are involved.xv Patients are vulnerable, and they are dependent on their doctors. However, as the medical profession is completely aware, but society less so, there is a flipside: patients and patient organizations are active and often proud and assertive participants and stakeholders in research. Increasingly, medicine development is patient-centered and patient-driven from the beginning, as emphasized by the KNAW report. xvi Yet another dilemma to be negotiated is therefore whether the boundary between care and research needs to be reinforced or made permeable, obviously with all necessary privacy precautions. In the latter scenario, Real World Data would become available more structurally, while patients can still opt out. Do patients have skin in the game? In one sense, obviously ‘yes’. They experience the burden of sickness. But in another sense not. Patients knowingly contribute to the greater good when they participate in research (and we’re still talking about a very small percentage of the total patient population), but it usually will not benefit them personally, while it also will not harm them if they choose not to participate.

Medical colleagues: you have a lot on your plates, with a pandemic on your hands, your research and all your efforts to improve the ways in which your research may benefit society, through carefully and 5 ethically constructed ecosystems of all stakeholders, while respecting their diverse roles and contributions: of academic research institutes, academic medical centers, clinicians, pharmaceutical companies, regulatory agencies, government, patient organizations etc. However, what we do must not only be right, it must also be seen to be right: sometimes by explaining, sometimes by modeling behavior and simply showing the public what we do, sometimes by an appeal to emotions. The Academy, the KNAW, has a duty to help in this enterprise. For as academics we stand to win or lose the trust of society: and that is the real and only way in which we have skin in the game.

Acknowledgments

Many colleagues have shared their personal experiences with the topic of this presentation with me. All opinions expressed here are my own; they bear no responsibility for these views and in fact, I am aware that some of them will disagree with some of these views. I owe heartfelt thanks to: Lex Bouter, Douwe Breimer, Hans Clevers, Marileen Dogterom, Naomi Ellemers, Jeroen Geurts, Ivo Giesen, Marc Groenhuijsen, Martin van Hees, Wilma de Koning, Miriam Koopman, Bob Löwenberg, Sjaak Neefjes, and Ton van der Steen. Thanks to Hermen Visser for designing the slides.

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Trust in Science: some recent reports:

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Rathenau, 2021a. Onderdeel over Vertrouwen in wetenschap binnen het dossier Corona-crisis: https://www.rathenau.nl/nl/dossiers/dossier-coronacrisis

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Trust in science: some foreign reports

Zweden 2021, VA Barometer (https://v-a.se/2021/02/va-barometer-2020-2021-in-english/) and trends from 2012 (https://v-a.se/english-portal/projects/studies/the-public/va-barometer/ ),

Duitsland 2020: https://www.wissenschaft-im-dialog.de/en/our-projects/science-barometer/sciencebarometer-2020/ .

UK 2020: https://www.ipsos.com/ipsos-mori/en-uk/ukri-research-how-has-covid-19-affected-trustscientists

ALLEA-reports, 2019: e.g. https://allea.org/portfolio-item/trust-in-science-and-changing-landscapes-ofcommunication/, see https://allea.org/truth-trust-and-expertise/.

VS, 2018: https://www.amacad.org/publication/perceptions-science-america (and for a wider point of view: https://www.amacad.org/publication/public-face-science-america-priorities-future).

On knowledge utilisation:

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-, 2021b. ‘Naar een valorisatie-ecosysteem met een stevig fundament’: KTO-Nederland naar een valorisatie-ecosysteem met een stevig fundament (universiteitenvannederland.nl)