PAPER

Why participating in (certain) scientific researchis a moral dutyJoanna Stjernschantz Forsberg, Mats G Hansson, Stefan Eriksson

Uppsala University, Departmentof Public Health and CaringSciences, Centre for ResearchEthics and Bioethics, Uppsala,Sweden

Correspondence toJoanna Stjernschantz Forsberg,Uppsala University—Centre forResearch Ethics and Bioethics,Box 564, Uppsala 75122,Sweden;joanna.forsberg@crb.uu.se

Received 12 June 2012Revised 18 December 2012Accepted 11 January 2013Published Online First31 January 2013

▸ http://dx.doi.org/10.1136/medethics-2013-101370

To cite: StjernschantzForsberg J, Hansson MG,Eriksson S. J Med Ethics2014;40:325–328.

ABSTRACTOur starting point in this article is the debate betweenJohn Harris and Iain Brassington on whether or notthere is a duty to take part in scientific research. Weconsider the arguments that have been put forwardbased on fairness and a duty to rescue, and suggest analternative justification grounded in a hypotheticalagreement: that is, because effective healthcare cannotbe taken for granted, but requires continuous medicalresearch, and nobody knows what kind of healthcarethey will need, participating in research should beviewed from the perspective of a social contract, basedon our mutual need for medical advances.

INTRODUCTIONThere is a longstanding debate on whether or not aduty to participate in medical research exists.Arguing in favour of such an obligation, RosamondRhodes has put forward a controversial proposalaccording to which all citizens would be requiredto perform research service periodically, just asthere are laws that demand that people pay taxesand serve on juries.1 While not advocating compul-sory participation, Schaefer et al2 have suggestedthat there is a moral duty to participate in biomed-ical research because medical knowledge is a publicgood that all benefit from, and Arthur Caplan3 hasargued that fair play generates an obligation toshare the benefits and burdens of biomedicalresearch. Others have denied the existence a dutyto participate, referring to injustices in the socialcontext within which research is conducted (eg,unequal access to healthcare),4 and claiming that itwould mainly serve the interests of the researchindustry, not individuals in general.5

Our starting point in this article is the debatebetween John Harris (in part together with SarahChan) and Iain Brassington on whether or not aduty to participate in research exists. Harris andChan6 7 have argued that it does, based on an obli-gation to rescue and the unfairness of being a free-rider, and while Brassington8 9 has not denied thatit might, he has claimed that the arguments thathave been put forward do not establish it.In the following, we will argue that there is a

moral duty to take part in medical research that:(1) involves diminutive risks, (2) imposes noburdens or costs and (3) is potentially beneficial.This includes research that is conducted on storedtissue samples and data in medical records andregistries. We will base the obligation to contributeon a contract grounded in self-interest.

RECAPITULATING THE ARGUMENTSIn the article ‘Scientific research is a moral duty’Harris argues that individuals have a duty to par-ticipate in biomedical research based on, first theobligation to do no harm and second, appeal tobasic fairness.6

The duty to rescueHarris claims that one of the most powerful obliga-tions that individuals have is to do no harm.According to him: ‘Failing to prevent harm is aseffective a way of ensuring that harm occurs, andhence as morally reprehensible, as doing harm dir-ectly’.7 From this he derives the duty to rescue inthe context of research: Because medical research isnecessary to relieve the suffering that exists due toillness, we have an obligation to further it.Brassington does not agree that failing to prevent

harm is as blameworthy as causing harm directly,stating: ‘Naturally, from time to time there mightbe something morally problematic about leavingthe world unaltered. But it is not qualitatively thesame as positively making a deleterious alterationto the world. One person does not make anotherworse off simply by not making him better off ’.9

In the absence of a pre-existing agreement thisseems reasonable; I do not make you worse offby not buying you a car, if I have not promisedto do so.Furthermore, according to Brassington, if there is

a duty to rescue, it is not clear that it gives rise toan obligation to promote medical research. Because‘…even if engaging in research is a form of rescue,it is not the only form of rescue, and we might stillhave a moral reason to pursue the other formsahead of research’.8 Since time and money may bebetter spent on rescuing people in other ways, it isnot necessarily blameable not to take part inresearch, which implies that it cannot be a duty.Similarly, if a duty to pursue rescue throughmedical research exists, it is not clear that it mustbe discharged by participating in research projects,because there are other ways to support researchthan by becoming a research subject, for instanceby donating money or taking a job as a researcher.So, although it is possible that a duty to rescue maygive rise to a specific obligation to participate inresearch under given circumstances (eg, during apublic health emergency), it seems not to be a justi-fication of a general duty to participate.Two other more specific duties might initially

look promising, but are questionable. First, it canbe argued that a duty to rescue gives rise to anobligation to engage in the kind of research that

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does not cost individuals anything or require active participa-tion, and thereby does not hinder them from attempting alter-native ways of rescue simultaneously. On this line of reasoning,becoming a researcher or donating money to research wouldnot relieve people of their putative duty to further medicine forinstance by accepting that tissue samples and data are used inresearch. However, even this duty is debatable due to the differ-ence between doing harm and doing good. While the duty notto do harm is a perfect duty that cannot be overridden by self-determination, the duty to do good is imperfect, that is, it islargely up to the duty holder’s discretion how it is executed.

Second, it can be claimed that the duty to participate doesnot apply to all, but only people that are in a similar situation asthe person in need of rescue ( just as individuals commonlyassist each other at seas or when climbing mountains). DeCastro has accordingly argued that the ‘commonality (in termsof their vulnerabilities and the requirements for dealing withsuch vulnerabilities) between the prospective subjects and thestudy’s potential beneficiaries provides a basis for generating aduty to serve as research subject’.10 Although such a limitedduty may seem more plausible, it does not give rise to thegeneral duty that Harris wants to defend.

Free-riding and fairnessAccording to Harris we all benefit from the social practice ofmedical research, and because we accept this benefit we have aduty based in justice to contribute to its existence. Not doing sois free-riding, which is unfair.

Brassington8 9 does not agree with Harris that those whobenefit from research without participating in research studiesact as free-riders. He contends that they do pay for the benefitsthey receive from scientific research through taxes, insurances orupon receipt. He goes further asserting that even if they werefree-riders, free-riding is not morally worrisome, stating that:‘people who do not support research, irrespective of whether ornot they are free-riders, do not make the world a worse place’.9

He also claims that ‘…appeals to fairness will only stand achance of getting anywhere when we do actually want andexpect to benefit from the fruit of that research. Should we beindifferent about it, it would be hard to sustain an argumentthat we are acting unfairly by not supporting it…’9 But all ofthese assertions are contestable.

First, as Harris notes in his reply, medical research cannot becarried out using money alone. Other contributions are neces-sary, such as being a participant or donating samples.7

Furthermore, the idea that individuals have a right to decidehow they want to contribute to research is problematic since itimposes a risk of bias that threatens the validity of the results(because individuals that agree to participate may differ fromthose who do not).11

Second, people who do not support research do make theworld a worse place than it would have been had they contribu-ted their fair share to the common quest of improving health-care. Schaefer et al2 use an example that illustrates this point:people living in a neighbourhood that want to invest in a speedbump in order to make the streets safer. The authors claim thatthe residents that do not contribute although they benefit fromthe increased safety (that they desire) act as free-riders, becauseif they had contributed, each individual would have had to payless. But they assert that this argument is not valid in thecontext of medical research because the burden is not alleviatedon those who participate, if more people contribute. However,there is another perspective to consider: more or better researchcan be carried out if everybody participates, just as more or

better speed bumps can be put in place if all neighbours contrib-ute. Thus, even if those who refrain from participating do notincrease the cost that others must pay, they decrease the benefitthat could be obtained if all individuals that wished to benefitdid their share. In the case of speed bumps there may be only acertain number or quality necessary, but the need for medicaladvances is arguably unlimited.

Third, although it seems reasonable that appeals to fairnessrequire an expectation of benefiting from the research,Brassington’s definition of ‘that research’ as a specific researchprogramme is debatable. The fruit of the research may as wellbe drawn from the existence of an effective research enterpriseas such.11 If samples and data from all are used on the sameterms in order to improve healthcare, it does not seem relevantwhose material has given rise to which results. That is, it is notnecessary to specify from what study we expect to benefit andin what way; we can simply hope to benefit as much as possiblefrom the research that is carried out using everybody’s samples.His assertion that unexpected benefits from a research pro-gramme do not generate obligations fails for the same reason.

To conclude, Harris is arguably right in claiming that consid-erations of fairness underlie the duty to participate in research.However, for Harris the requirement to be fair is coupled to avirtually unlimited moral demand to make the world a betterplace by preventing harm. In the following we will attempt tostrengthen the argument by explicitly pointing out how a dutyto be fair could be generated, without appealing to far-reachingfoundations of moral sacrifice. We do so by situating medicalresearch in the framework of a hypothetical contract groundedon self-interest.

AN ALTERNATIVE JUSTIFICATION OF A DUTYTO PARTICIPATEA contract based in self-interestThe contract view starts with the recognition that there arecertain goods that individuals cannot attain on their own, butthat require cooperation. If the good is sufficiently important, itis rational even for purely self-interested individuals to agree tomutually constrain their freedom in order to acquire it. This isarguably true of effective healthcare because health is funda-mentally valuable to all. Since for many diseases treatments andcures do not exist, and we do not know in advance what kindof medical care we (and those we care about) will come to need,we all have an interest in medical advances. Such advances canonly be achieved through research. Research requires cooper-ation, and for us to cooperate as efficiently as possible, unneces-sary hurdles must be avoided.

Using the example of biobank research, requiring consent tostore and use tissue samples and data consumes time and costsmoney. It also imposes a risk of invalidating results becausewhen participation is not universal, registries and biobanks areaffected by both those who participate and those who do not,resulting in incomplete information and data-bank bias.12 So ifindividuals maintain a right to decide what can be done withtheir samples and data (which may seem to lie in their best inter-est), research is impeded and advances in healthcare may bedelayed or even blocked, which is arguably not in anyone’sinterest. This is the classic problem of collective action: Thechoice that leads to the best outcome for an individual whenconsidered in isolation gives rise to an outcome that is subopti-mal when the decisions of all are combined. The result is sub-optimal both compared with the best possible outcome for theindividual and, more importantly in this context, comparedwith other outcomes that are achievable through cooperation.

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Therefore, it is rational to accept a contract imposing a duty toparticipate, when the associated risks and costs are diminutive.It is worth noting that individuals also have a more direct inter-est in participating in biobank research because future treat-ments for those whose genes are not represented in research arelikely to be compromised as personalised medicine movesforward.13

However, there must be limits to the duty to participate,because the benefit of accepting the contract must outweigh thecosts and risks involved for each individual ex ante. This is whyit can apply only to certain research. Of course in reality it isnot clear that the benefit will always outweigh the cost for everyperson. Some individuals may suffer harm, and these need obvi-ously not be the same individuals who would have been harmedanyway had the research not been carried out. But the risk(understood as both the degree and likelihood) of harmimposed by agreeing upon the contract must stand in relation tothe anticipated benefit for each individual.

This is clearly illustrated by the case of vaccinations: If manypeople are vaccinated some will inevitably suffer from side-effects that may be serious, and it is not likely that these will bethe same individuals that would have suffered harm from thedisease had there been no vaccinations. Although a vaccinationprogramme may be successful from the perspective of the popu-lation, for a specific individual the consequences can be devas-tating. But even for that individual accepting the immunisationprogramme was rational, if the risks imposed by there not beingan efficient programme outweighed the risks imposed by theimmunisation.

Thus, it is not the actual outcome for an individual that deter-mines whether or not accepting the contract is rational (becauseit cannot be known in advance), but the alternatives that areavailable at the time it is agreed upon. That is, the risks involvedin accepting the contract must be weighed against the risksimposed by its non-existence.

It is important to note that the purpose of the contract is notto maximise the public good or utility in general, but to opti-mise the outcome for each individual, as compared with a situ-ation in which all pursue their own best interests independently.So, this is not a case of prioritising the good of society (or of amajority) over that of individuals (or a minority), because thecontract serves to benefit each individual. Consequently, it doesnot collide with the widely endorsed principle that the interestof the individual should always prevail over that of society inmedical research.14

Considerations of fairnessIt now seems clear why fairness is relevant to consider. Again,using the example of biobank research, agreeing to routinely usesamples for research increases the benefit that can be achieved.However, if an individual was to oppose contributing in prac-tice, it is unlikely that it would hinder the specific research thathe or she would later come to need, because there are manyother samples to use and many different kinds of research arecarried out. It is only in the unlikely event that the individual’ssample would have been the specific sample necessary for thesuccess of the specific research project that would have lead tothe specific advances necessary for him or her that not contrib-uting would be an inferior decision from the point of view ofpure self-interest, when considered in isolation. The problem isobvious: Accepting the contract grants us our second bestoutcome, but by deviating when others adhere we may obtainour first.

This applies to many societal agreements. Consider the caseof pollution: If we agree that fresh air and clean water areimportant goods that we wish to preserve, and in order to do soaccept a contract aiming to hinder us from polluting, the indi-vidual who knowingly cheats by not adhering (because he orshe realises that his or her negative contribution will have nosignificant impact on the situation as a whole) is choosing theaction that leads to his or her own best outcome, while at thesame time relying on others to forego theirs.

But this line of reasoning is open to everybody, and if allengage in such behaviour, the benefit of increased medicalknowledge, or an unpolluted environment, cannot be attained.We end up worse, approaching the situation where all pursuetheir own self-interest independently again. Relying on others todo their part while personally reaping the benefits from notadhering is free-riding, which is unfair, because it amounts tonot paying for what you receive and would agree to pay for, ifcheating was not possible. Thus, applying a social contract viewoffers a plausible explanation of why fairness is relevant to con-sider in the context of justifying a duty to participate in medicalresearch. But a duty to adhere can be defended even if consid-erations of fairness are not admitted.

The duty to adhereTraditional contract theories can be divided into two classes, thefirst presupposing a prior obligation to honour agreements, andthus to adhere to acceptable contracts (eg, exemplified by thesocial contract of John Locke). The second type of theorymakes the contract in itself a ground for complying (eg, thetheory of Hobbes); that is, it attempts to explain the duty toadhere as such.

From the latter perspective, David Gauthier has introducedthe concept of ‘constrained maximizers’, distinguishing betweenpersons who are disposed to straightforwardly fulfilling theirinterests in the particular choices they make, and constrainedmaximisers who are disposed to comply with mutually advanta-geous moral constraints, provided they expect the same compli-ance from others.15 He argues that the net advantage thatconstrained maximisers gain from cooperating is larger thanthat which persons who exploit others may expect, and thus itis rational to ‘be disposed to constrain maximising behaviour byinternalising moral principles to govern one’s choices’.15

The contract that we propose is based in self-interest, that is,it is rational for individuals to accept. A moral duty to adherecan be justified either by a pre-existing obligation to honourone’s agreements (a widely endorsed moral principle) or byreferring to the rationality of doing so. It need not, but can, beenforced by legal instruments, for example, a parliamentarydecision to establish quality registries and biobanks withinhealthcare.

Potential objectionsAn obvious objection to the suggested view is that there is infact no contract, and that individuals cannot be bound by a con-tract that they have not consented to. Although it is of coursehypothetical, there are many other instances in which we aremorally (and often also legally) bound to social contracts thatwe have not actively consented to; as citizens we are for instanceobliged to pay taxes, although we have not signed a contractagreeing to do so. Another potential objection is that we are not(all) self-interested benefit maximising creatures, but actuallycare about others, and that the proposed contract therefore restson false premises. However, we have intentionally grounded theduty to participate on the weakest possible assumption, that is,

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individuals care only about themselves, because allowing forconsiderations about the well-being of others will only make theargument for a duty stronger. It might also be objected thatthere are alternative contracts that would be more rational forindividuals to accept, for example, one that imposes a duty toparticipate on all others but oneself. However, the other indivi-duals would not accept such a contract (because it would beinferior from the point of view of their self-interest) so it wouldfail and thus not be rational at all.

There are also general objections against a duty to participatein medical research, such as the fact that all individuals do nothave (equal) access to healthcare or that research does not guar-antee advances in clinical care. Although these arguments areclearly relevant in the context of a duty to participate inresearch that imposes significant costs or risks (that must be out-weighed by corresponding benefits), they pose less threat to aduty to participate in low-risk research. It is also worth stressingthat people who have limited access to healthcare benefit frommedical advances too, as is exemplified by the increased use ofdrugs against HIV in developing countries.

CONCLUSIONSWe conclude that medical research can be viewed from the per-spective of a social contract based in self-interest because allindividuals share an interest in advances in healthcare that canonly be attained through cooperative research efforts. Thisimplies that there is a moral duty to contribute to research thatimposes only diminutive risks, including research using storedsamples and data.

Contributors JSF wrote the first draft of the article. All authors revised themanuscript and contributed to important intellectual content.

Funding The research for this paper was made possible by funding from the IMIproject BT-CURE (Grant agreement No. 115142-1), the EU Seventh FrameworkPrograms RD-Connect, EuroTeam, BiobankCloud and BBMRI-LPC and the BBMRI.seinfrastructure project financed by the Swedish Research Council. The funders had noinfluence on the design and content of the article. The funders are not liable for anyuse that may be made of the information herein.

Competing interests None.

Provenance and peer review Not commissioned; externally peer reviewed.

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doi: 10.1136/medethics-2012-1008592013

2014 40: 325-328 originally published online January 31,J Med Ethics Joanna Stjernschantz Forsberg, Mats G Hansson and Stefan Eriksson research is a moral dutyWhy participating in (certain) scientific

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