Participation in Scientific Progress

The word "benefits" is wider than products. The benefits of scientific progress "are not restricted to the material benefits or products of scientific advancement, but include the development of the critical mind and faculties associated with doing science". A person who has never been allowed near the method has been denied a benefit even if the medicine reaches them.

The drafting record points the same way. The Committee relies on the preparatory work of article 15, which shows the article was written to develop article 27 of the Universal Declaration of Human Rights, and article 27 recognises a right to participate in scientific advancement and not only to benefit from its applications. That earlier article is worked in its own chapter.

The other official texts say participate. The Committee notes that the English text of the Universal Declaration uses the word "share", while the French, Spanish and Russian texts, which are equally official versions of the same instrument, use the verb to participate. The participatory limb was in the 1948 text and was obscured by one language's choice of word.

Broken down: the four things participation means

One, doing science. Paragraph 10 says that doing science does not concern only scientific professionals but also includes "citizen science", which the Committee glosses in the same sentence as ordinary people doing science, and the dissemination of scientific knowledge. The obligation has two halves: States "should not only refrain from preventing citizen participation in scientific activities, but should actively facilitate it".

Two, deciding what is researched. This is the limb with teeth. Paragraph 55 provides that, with due respect to scientific freedom, some decisions concerning the orientation of scientific research or the adoption of certain technical advancements should be subjected to public scrutiny and citizen participation, and that scientific and technological policies should as far as possible be established through participatory and transparent processes and implemented with accompanying transparency and accountability mechanisms.

Three, knowing enough to take part. Participation without information is theatre. Paragraph 53 requires States to create an environment in which actual or perceived conflicts of interest are adequately disclosed and regulated, particularly where researchers advise policymakers. Paragraph 54 requires States to promote a culture of active citizen engagement with science through informed democratic debate and dialogue between the scientific community and society. Paragraph 49 requires equitable and open access to scientific literature, data and content, including by removing barriers to publishing, sharing and archiving scientific outputs.

Four, taking part in the control of risk. Paragraph 56 opens by saying that participation "also includes the right to information and participation in controlling the risks involved in particular scientific processes and its applications". Paragraph 57 completes the thought: in controversial cases the risks and potential of a technical advance should be made public so that society can decide, through informed and participatory public deliberation, whether the risks are acceptable. The principle that governs decisions under uncertainty is taken up in the chapter on the precautionary principle.

Participation is empty if whole groups cannot take part

Paragraph 28 identifies the groups that have experienced systemic discrimination in the enjoyment of this right, and names women, persons with disabilities, lesbian, gay, bisexual, transgender and intersex persons, indigenous peoples and persons living in poverty. It adds that temporary special measures might be necessary to achieve substantive equality.

Two of those are worked in a way this chapter needs. On women, paragraph 30 identifies a double discrimination: first, women have the right to participate in scientific research on an equal footing with men, so unequal access to scientific education or careers is discrimination in itself; second, because women are underrepresented in research, the research and the technologies that come out of it are commonly gender biased and insensitive to the needs of women. The exclusion damages the science as well as the excluded.

On indigenous peoples, paragraph 40 requires States to provide the educational and technological means to take part in the global scientific dialogue, and states that genuine consultation in order to obtain free, prior and informed consent is necessary whenever a State or a non-State actor conducts research, takes decisions or creates policies relating to science that have an impact on indigenous peoples, or uses their knowledge. Free, prior and informed consent here means agreement given without coercion, obtained before the activity begins, and with the facts disclosed.

The core obligations in paragraph 52 turn all of this into something a State must do first rather than eventually. Two of the listed bullets are participatory in terms: to identify and eliminate any law, policy, practice, prejudice or stereotype that undermines women's and girls' participation in scientific and technological areas, and to develop a participatory national framework law on this right which includes legal remedies for violations, together with a participatory national strategy or action plan.

A worked example

A State announces a national programme to sequence the genomes of ten thousand of its citizens, to build a database for medical research. Dr Iyer directs it. Kavita lives in a village selected for sampling, and her community has been asked to take part.

Was the decision to fund this taken participatively? Paragraph 55 is the provision. The choice to spend a research budget on genomic sequencing rather than on, say, drinking water quality is a decision concerning the orientation of scientific research, and it should have been subjected to public scrutiny and citizen participation, through a transparent process, before the money moved.

Are the conflicts of interest on the table? If Dr Iyer also advises the ministry that approved the funding, or if the sequencing contract goes to a company in which the programme's advisers have an interest, paragraph 53 requires that the interest be disclosed and regulated. Note that this obligation attaches whether or not anybody has behaved badly: the requirement is disclosure of actual or perceived conflicts.

Does Kavita's community get a say, or only a form to sign? If the community is an indigenous one, paragraph 40 requires genuine consultation in order to obtain free, prior and informed consent before the research is conducted or its knowledge used. That is a decision about whether the research happens there at all, and it is not answered by Kavita individually signing a consent form at the sampling tent.

Can Kavita take part in the science? Paragraph 10 says the State must actively facilitate citizen participation, not merely permit it. A programme that treats the sampled population purely as a source of material, and never as people who might learn the method, read the results or question the design, has satisfied the delivery half of the right and failed this half.

Are the results published? Paragraph 49 requires equitable and open access to scientific literature and data, particularly for research financed with public funds. A publicly funded database whose findings are available only to the institutions that hold it fails that obligation.

Distinctions

What it does not mean

It is not a vote on what is true. Paragraph 55 opens with the words "with due respect to scientific freedom". Participation governs decisions about the orientation of research and the adoption of technical advances. It does not put the content of a scientific finding to a show of hands, and paragraph 57 says in terms that the precautionary principle should not hinder and prevent scientific progress.

It is not the scientist's own freedom. The freedom indispensable for scientific research is a separate limb of article 15, stated in paragraph 3 of that article and worked in its own chapter. Participation is a right of the public, including the public who are not scientists; scientific freedom is a protection for the researcher against interference. They can pull against each other, which is precisely why paragraph 55 begins by acknowledging the tension.

It is not consent. Consent is the individual's control over an intervention on their own person or data, and it is exercised at the moment of the intervention. Participation is exercised earlier, collectively, over the design and direction of the enterprise. A study in which every participant signed a valid consent form may still have been decided on without any participation at all.

It is not satisfied by an announcement. Paragraph 55 requires participatory and transparent processes that are implemented with accountability mechanisms attached. A consultation held after the decision is taken, or one whose outcome nothing depends on, does not meet a requirement expressed in those terms.

Limits

The interpretation is authoritative, not binding. General Comment No. 25 is a document of the Committee on Economic, Social and Cultural Rights, adopted at its sixty-seventh session and issued as E/C.12/GC/25 on 30 April 2020. It is the treaty body's own reading of article 15, and it is the best evidence of what the provision requires, but it is not itself a treaty and it creates no new obligation. What binds a State is article 15, read as the Committee reads it.

Participation can be limited. Limitations on this right must satisfy article 4 of the Covenant, which permits only limitations determined by law, compatible with the nature of the right, and solely for the purpose of promoting the general welfare in a democratic society. The Committee adds in paragraph 21 that a limitation must respect the minimum core of the right, must be proportionate, and where several means could achieve the aim, the least restrictive must be chosen.

There is no ready enforcement. The Covenant's ordinary machinery is State reporting to the Committee, and paragraph 2 of the General Comment records that science is one of the areas of the Covenant to which States parties give the least attention in their reports. A right that depends on being reported on, in the field States report on least, is weakly enforced, and an honest answer says so.

Quick revision

• The right in article 15(1)(b) is the right to participate in and to enjoy the benefits of scientific progress and its applications: General Comment 25, paragraph 11.
• The passive reading is rejected in paragraph 9: no rigid distinction between the scientist who produces and a population entitled only to receive.
• Four sources for the participatory limb, all in paragraph 10: article 15(1)(a) cultural life; benefits are wider than products; the drafting record and article 27 of the Universal Declaration; and the French, Spanish and Russian texts which say participate where the English says share.
• Four contents: doing science (citizen science, actively facilitated); deciding the direction of research (paragraph 55); information and disclosure of conflicts of interest (paragraphs 53, 54, 49); and participation in controlling risk (paragraphs 56 and 57).
• Excluded groups: paragraph 28. Women suffer a double discrimination, paragraph 30. Indigenous peoples require free, prior and informed consent, paragraph 40.
• Core obligations, paragraph 52: eliminate what undermines women's and girls' participation, and adopt a participatory national framework law with remedies.
• Limits: article 4 of the Covenant, proportionality and the least restrictive means; the General Comment interprets rather than binds.

Test yourself

1. Article 15(1)(b) says "to enjoy the benefits". Where does a right to participate come from? From four arguments in paragraph 10 of General Comment 25. Article 15(1)(a) recognises the right to take part in cultural life, scientific activity falls within cultural life, and taking part in cultural life therefore includes taking part in scientific progress and in decisions concerning its direction. The benefits of science are not only its material products but include the development of the critical mind associated with doing science. The drafting record shows article 15 was written to develop article 27 of the Universal Declaration, which includes participation. And the French, Spanish and Russian texts of that article, equally official, use the verb to participate where the English uses share.

2. Distinguish participation in scientific progress from informed consent. Consent is individual, is exercised at the moment of an intervention on a person or their data, and protects control over what is done to that person. Participation is collective as well as individual, is exercised before and during the enterprise, and protects a say in whether the research is done, in what direction and on what terms. A trial in which every participant gave valid consent may still have been designed and funded without any public participation, and the right in article 15(1)(b) would still be unsatisfied.

3. A State consults the public after it has signed the contract for a new technology. Is that participation? On the wording of paragraph 55, no. The paragraph requires that decisions concerning the orientation of research and the adoption of technical advances be subjected to public scrutiny and citizen participation, that policies be established through participatory and transparent processes, and that they be implemented with accompanying transparency and accountability mechanisms. A consultation after the decision has been taken is not a process by which the policy was established, and nothing turns on its outcome.

4. Why does the Committee treat the exclusion of women from science as two wrongs rather than one? Paragraph 30. First, women have the right to participate in scientific research on an equal footing with men, so unequal access to scientific education and careers is itself discrimination. Second, because women are underrepresented in research, the research that gets done and the technologies that result are commonly gender biased and insensitive to women's particularities and needs. The first wrong is done to the excluded women; the second is done to everyone who then relies on science built without them.

5. Does participation mean the public can overrule a scientific finding? No. Paragraph 55 begins "with due respect to scientific freedom", and paragraph 57 states that the precautionary principle should not hinder and prevent scientific progress. What is opened to participation is the orientation of research, the adoption of particular technical advancements and the acceptability of the risks they carry, not the content of what the evidence shows. The public decides what shall be pursued and what risks are worth running; it does not decide what is true.