Does bioethics hold back humanity?

The Holy See considers this international document on the human genome and human rights to be important. In view of the rapid advances in science and technology, with their promises and their dangers, UNESCO wanted to reaffirm the need for rules in this area and, for the first time, made a solemn declaration of the urgency to ensure that the human genome, along with human rights, also for the good of future generations and to protect human dignity, freedom of research and the requirements of solidarity.

Many points do indeed seem to be valued: For example, the refusal of any genetic reduction (Art. 2b and 3), the affirmation of the priority of respect for the human being over research (Art. 10), the rejection of discrimination (Art 6), the confidentiality of data (Art. 7), the promotion of independent ethics committees (Art. 16), the obligation of states to promote education in bioethics and a discussion that is also open to religious trends (Art. 20 and 21). Finally, it is interesting that follow-up measures are also planned for the application of the declaration (Art. 24).

It is precisely because of the importance of this document that the Holy See feels obliged to make a number of comments in relation to the fundamental statements of this declaration, which calls on the states to implement the principles mentioned therein (Art. 22).

Relationship between human dignity and the human genome

Article 1 affirms that "the human genome underlies the fundamental unity of all members of human society and the recognition of their inherent dignity and diversity." The way the text is formulated, it seems to state that humans find their own dignity in the genome. In truth, it is human dignity and the unity of human society that give the human genome its value and demand that it be specially protected.

Designation of the human genome as “human heritage«

The second part of Article 1 reads: "In a symbolic sense it (= the genome) is the inheritance of humanity." According to the explicative note (No. 20), this formula is intended to mean the responsibility of the whole of society and exclude unacceptable collective appropriation . However, the sentence is vague and unclear; it would be better to omit labels such as "heritage of humanity" and to affirm that "all humanity has a special obligation to protect the human genome".

The genome also has two dimensions: a general one because it is a characteristic of all members of human society; and an individual one, because it is different for each person who receives it from his parents at the moment of conception. In this latter sense, we commonly speak of a "genetic inheritance" of human beings. This makes it clear that this "inheritance" must be placed under basic legal protection, because this "inheritance" belongs to each person specifically and uniquely.

Free and conscious consent

Article 5a deals with the rights of those who are subjected to "research, treatment and diagnosis" on their own genome. When establishing specific norms, it may be appropriate to distinguish between research, treatment and diagnosis because they require different interventions.

Article 5e gives advice on researching the genome of a person who is unable to give consent. In the event that this research is carried out without direct health benefit for this person, but for the benefit of a third party, it is provided that this research will only be carried out "in exceptional cases" and "with the utmost caution". In view of the fact that this is research, that is to say a very limited intervention in the patient, this can be permitted on the condition that it "is not otherwise possible"; if the person is unable to give consent, further conditions should be provided: minimal risk, legally mandated authorization, certain health benefits for people in the same category, lack of other resources and research opportunities.

Communication of the results of a genetic test

Art. 5c reaffirms the respect for the right of every individual to decide whether or not to be informed of the results of the genetic test and the consequences thereof. It should be noted that the right of the individual concerned cannot be absolute in this regard. Those cases must be taken into account in which this instruction can have health consequences for other people (e.g. relatives).

It would also be useful to reiterate the urgency that information on test results should be accompanied by professional "genetic counseling".

Conscientious objection for researchers and medical staff

Article 10 is entirely appropriate: “Research or its application to the human genome. . . should not take precedence over respect for human rights, fundamental freedoms and human dignity of individuals or, if applicable, of groups of people «. It would be desirable to add respect for possible conscientious objection on the part of researchers and medical professionals, so that those working in these fields are given the right of conscientious objection to interfering with the human genome.

Refusal to clone humans

Article 11 affirms that reproductive cloning of humans is a practice contrary to human dignity and should not be allowed. Unfortunately, this formulation does not exclude the likewise unacceptable cloning of humans for other purposes, such as research and therapy.

Freedom of research

Article 12b rightly confirms: “The freedom of research. . . is part of freedom of thought «. This is a necessary but insufficient condition, since freedom of conscience and freedom of religion must also be guaranteed in order to conduct genuinely free research. On the other hand, the Universal Declaration of Human Rights (Art. 18) and the international treaty on civil and political rights (Art. 18) place freedom of thought, conscience and religion on the same level. It would therefore be desirable that where there is talk of freedom of thought in relation to freedom of research, the name "freedom of conscience and religion" should also be added.

Research into the prevention of genetic diseases

Article 17 encourages states to promote research aimed, among other things, at the "prevention" of genetic diseases. It must be kept in mind that "prevention" can be interpreted in different ways. The Holy See is against the systematic search for abnormalities in the fetus, the aim of which is to select unborn babies on the basis of genetic criteria.

No mention of the embryo and fetus

The explanation is deliberately limited to the human genome. So she does not name the bearers of rights she proclaims; it does not affirm that every human being has it from the moment he has developed his own genetic inheritance. There are also no references to the embryo and the fetus. This is a very delicate question, especially in relation to the embryo in the first 6 to 7 days of life. The fact that unborn human beings and human embryos are not expressly protected opens the door to discrimination and violations of human dignity, especially in the area of ​​genetic interference. It is precisely such discrimination and violations that the declaration seeks to prevent.

May 24, 1998

* Document prepared by the "Informal Working Group on Bioethics" (of which Bishop Mgr. Elio Sgreccia is a member), Department for "Relations in States", State Secretariat (Vatican City).