Biotechnology, Genetics and Human Dignity

Article 2(a): everyone has a right to respect for their dignity and for their rights regardless of their genetic characteristics. Article 2(b): that dignity makes it imperative not to reduce individuals to their genetic characteristics and to respect their uniqueness and diversity.

Article 2(b) is the operative core of the whole instrument and the sentence to learn. The wrong it names is reduction: treating a person as their genotype. That is precisely what an insurer does in pricing a policy on a marker, what an employer does in screening, and what a State does in classifying a population.

Article 3: the genome evolves and is subject to mutations, and contains potentialities expressed differently according to each individual's natural and social environment, including health, living conditions, nutrition and education. This is a scientific proposition placed in a legal instrument in order to defeat determinism: the genome is not destiny, and a legal consequence attached to a marker rests on a claim the science does not support.

Article 4: the human genome in its natural state shall not give rise to financial gains. Note the qualification. It does not prohibit patents on inventions derived from genetic knowledge; it addresses the genome in its natural state, and the line between the two is the whole of the argument in [Access to Medicines and Patents].

The rights of the person

Article 5 governs intervention. Research, treatment or diagnosis affecting an individual's genome may be undertaken only after rigorous and prior assessment of the potential risks and benefits and in accordance with national law; in all cases the prior, free and informed consent of the person must be obtained, and where they cannot consent, consent or authorisation is obtained as prescribed by law, guided by their best interest; research protocols must be submitted for prior review; and where a person lacks capacity, research affecting their genome may be carried out only for their direct health benefit, research without expected direct benefit being permissible only by way of exception, with the utmost restraint, at minimal risk and burden, where it is intended to benefit others of the same age category or with the same genetic condition.

Article 5(c) states a right that has no real counterpart elsewhere in human rights law: the right of each individual to decide whether or not to be informed of the results of a genetic examination and of the consequences. It is a right not to know, and it exists because the information is predictive and unalterable, so that receiving it can injure a person who can do nothing with it.

Article 6: no one shall be subjected to discrimination based on genetic characteristics that is intended to infringe or has the effect of infringing human rights, fundamental freedoms and human dignity. Note "or has the effect of", which reaches indirect discrimination.

Article 7: genetic data associated with an identifiable person and stored or processed for research or any other purpose must be held confidential in the conditions set by law.

Article 8: every individual has the right to just reparation for damage sustained as a direct and determining result of an intervention affecting their genome.

Article 9: limitations on the principles of consent and confidentiality may be prescribed only by law, for compelling reasons, within the bounds of public international law and international human rights law. It is the limitation clause, and it is narrow.

Research and its limits

Article 10: no research or research application concerning the human genome, in particular in biology, genetics and medicine, should prevail over respect for the human rights, fundamental freedoms and human dignity of individuals or of groups.

Article 11: practices contrary to human dignity, such as reproductive cloning of human beings, shall not be permitted, and States and competent international organisations are invited to co-operate in identifying such practices and taking the necessary measures.

Article 11 is the clearest instance in the whole of this paper of dignity operating as an operative legal standard rather than as an aspiration. It does not say cloning is unsafe, or that it is unpopular. It says the class of prohibited practices is defined by contrariety to dignity, and gives reproductive cloning as an example of the class rather than as its whole content. That drafting is deliberate: it leaves the category open, so that practices not yet invented can fall within it.

Worked example

An insurer proposes to require applicants for life cover to disclose the results of any genetic test they have taken, and to price the policy accordingly. It argues that it does not require anyone to take a test, that it asks only for information the applicant already has, and that non-disclosure of known risk is a familiar ground for avoiding a contract.

Article 6 is engaged directly. Discrimination based on genetic characteristics that has the effect of infringing rights and dignity is prohibited, and the words "has the effect of" defeat the answer that no discrimination was intended.

Article 2(b) names the wrong precisely. Pricing on a marker reduces the individual to their genetic characteristics, which is what article 2(b) says dignity makes it imperative not to do.

Article 3 answers the actuarial argument. The genome contains potentialities expressed differently according to the individual's environment, health, living conditions, nutrition and education. A marker is a probability across a population, not a fact about this applicant, so the insurer's inference is weaker than it presents itself as being.

Article 5(c) shows the second harm. A rule of this kind destroys the right not to know, because a person who wishes to remain uninformed must now choose between the knowledge and the insurance. The pressure operates without anyone compelling a test, which is why the insurer's first argument does not answer the objection.

And the harm is not confined to the applicant. A test result discloses about siblings and children who are not parties to the contract. That is the shared property of genetic information doing legal work, and it is the reason this cannot be handled as an ordinary question of contractual disclosure.

What it does NOT mean

The genome is not the common property of humanity. Article 1 says heritage "in a symbolic sense", and the qualification is there precisely to prevent the property reading.

Article 4 is not a prohibition on biotechnology patents. It addresses the genome in its natural state. What may be patented, and on what conditions, is a question for patent law, and in India for section 3(d) of the Patents Act, taken up in [Access to Medicines and Patents].

Genetic non-discrimination is not a bar on all use of genetic information. Article 9 permits limitations on consent and confidentiality by law, for compelling reasons, within the bounds of international human rights law. Clinical use with consent is the ordinary case and is not touched.

And dignity is not a trump card. It is doing specific work here, identified in article 2(b) as the prohibition on reducing a person to their genetic characteristics. An answer that invokes dignity without saying what it forbids in the case at hand has used the word rather than the concept.

Quick revision

• Genetic information is shared, predictive, immutable and constitutive, which is why privacy and equality alone do not answer it and why the instruments use dignity.
• UNESCO 1997, adopted 11 November 1997, endorsed by GA resolution 53/152 of 9 December 1998. Not a treaty.
• Article 1: the genome underlies the unity of the human family; in a symbolic sense the heritage of humanity. Article 2(a): dignity and rights regardless of genetic characteristics. Article 2(b): imperative not to reduce individuals to their genetic characteristics. Article 3: potentialities expressed differently according to environment, so the genome is not destiny. Article 4: the genome in its natural state shall not give rise to financial gains.
• Article 5: prior risk assessment, prior free and informed consent, prior review of protocols, and for a person without capacity, direct health benefit save by exception. Article 5(c): the right not to know.
• Article 6: no discrimination on genetic characteristics intended to or having the effect of infringing rights and dignity. Article 7: confidentiality. Article 8: just reparation. Article 9: limitations on consent and confidentiality only by law, for compelling reasons.
• Article 10: no research application shall prevail over rights, freedoms and dignity. Article 11: practices contrary to human dignity, such as reproductive cloning, shall not be permitted, the class being left open.

Test yourself

1. What four properties of genetic information make it a distinct legal problem? It is shared, because a person's genome is substantially that of their parents, siblings and children, so a disclosure by one person discloses about others who have not consented. It is predictive, speaking to a future that has not occurred and which the person cannot disprove. It is immutable, so a harm caused by disclosure cannot be undone by changing anything. And it is constitutive, being in one sense the specification of the person rather than merely information about them. Together these defeat an analysis built only on privacy and consent, since consent by one person cannot cover the others implicated and no remedy can restore the position.

2. Set out article 2(b) of the 1997 Declaration and explain why it is the operative core of the instrument. It provides that the dignity of everyone, regardless of their genetic characteristics, makes it imperative not to reduce individuals to their genetic characteristics and to respect their uniqueness and diversity. It is the operative core because it names the specific wrong that genetic technology makes possible: reduction, that is, the treatment of a person as their genotype. That is what an insurer does in pricing on a marker, an employer in screening, and a State in classifying a population, so the article converts dignity from a preambular sentiment into a test that can be applied to a practice.

3. What is the right not to know, where is it found, and why does it exist? It is the right of each individual to decide whether or not to be informed of the results of a genetic examination and of the resulting consequences, stated in article 5(c) of the 1997 Declaration. It exists because genetic information is predictive and unalterable: a person may learn that they will probably develop a condition they can do nothing to prevent, and the knowledge injures without enabling any action. It has no close counterpart elsewhere in human rights law, where the usual concern is to secure access to information rather than to protect a person from receiving it.

4. Why is article 11 significant for the argument that dignity is an operative standard rather than rhetoric? Because it defines a prohibited class by reference to dignity alone. It provides that practices contrary to human dignity, such as reproductive cloning of human beings, shall not be permitted, and invites States and competent international organisations to co-operate in identifying such practices and in taking the measures necessary. It does not rest the prohibition on safety, on efficacy or on public opinion, and it gives reproductive cloning as an example of the class rather than as its whole content, which leaves the category open so that practices not yet invented may fall within it. Dignity is therefore performing the function of a legal standard, supplying the criterion by which a practice is judged.

5. An employer requires applicants to disclose existing genetic test results but requires nobody to be tested. Which provisions answer it? Article 6 is engaged directly, since it prohibits discrimination based on genetic characteristics that is intended to infringe or has the effect of infringing human rights, fundamental freedoms and human dignity, and the words "has the effect of" defeat the argument that no discrimination was intended. Article 2(b) identifies the wrong as reduction of the individual to their genetic characteristics. Article 3 answers the argument from actuarial or occupational rationality, because the genome contains potentialities expressed differently according to the individual's environment, health, living conditions, nutrition and education, so a marker is a probability across a population rather than a fact about the applicant. Article 5(c) shows the second harm, since a requirement of this kind destroys the right not to know by forcing a person who wishes to remain uninformed to choose between the knowledge and the employment. And article 7 is engaged because genetic data associated with an identifiable person must be held confidential in the conditions set by law, which a general disclosure requirement circumvents.