Could obligatory screening for Thalassemia in Cyprus violate the bioethical rules?

Question

Stefan Beck, a visiting assistant professor at the University of California at Berkeley, claimed:

“The obligatory screening and counseling for Thalassemia in Cyprus is one of the most successful public health programs – but it violates all existing ethical norms. It is obvious that this program is successful because it violates the bioethical rules formulated by international agencies and associations of geneticists."

Source: Gene Letter, Leading Online Magazine of Genetic.

Could that health public program violate the bioethical rules formulated by international agencies and associations of geneticists?

Since Thalassemia is a dangerous desease, I don't see how that claim can be true.

What are the facts?

Answer 1

Your linked article has its own pointers to the issue: it says that the screening for being a carrier of a single mutation for beta thalassemia is compulsory and that the state (with religious backing) prevents marriage between carriers even if unrelated. This degree of compulsion is moving towards a eugenics policy and is similar to the past compulsory screening of African-Americans for sickle-cell anaemia (another recessive blood disorder) in several US states until the 1970s. Being identified as a carrier of such diseases can lead to stigmatisation.

The typical ethical position for genetic screening is that it should be voluntary and the results should be private, to avoid genetic discrimination, even if this privacy may adversely affect other family members. Some of the ethical issues on screening were discussed in Nature Education, though related to Huntingdon's disease. The more general issue has led to laws such as the US Genetic Information Nondiscrimination Act of 2008.

For a more speculative view of where widespread genetic screening might lead, consider the film Gattaca.

Answer 2

Mary Petrou : Screening for beta thalassaemia: Soon after, confidential premarital screening was made mandatory among Greek Cypriots by the Greek Orthodox Church and among Turkish Cypriots by the civil authorities.

Cyprus indeed has a form of mandatory screening.

WHO - Genomics and World Health - Page 150 : When countries implement genetic screening programmes, which by definition are directed at a specific population, individuals should not be included in these programmes without having given their free and informed consent. Even when the screening is only to establish epidemiological data, the informed consent of participants must be obtained.

As Cyprus policy doesn't include informed consent, but instead mandatory screening, they seem to be in violation of the WHO policy.

Nuffield Council on Bioethics Consent 5.3 The 1993 Report recommended that adequately informed consent should be a requirement for all genetic screening programmes (see also Appendix A). In this section we consider subsequent developments relating to consent. The Council has concluded in reports published since 1993 that the ethically significant requirement of consent is not that it should be complete, but rather that it should be genuine.

So people who think about the issues of ethics also value consent.

Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine

Chapter II – Consent

Article 5 – General rule

An intervention in the health field may only be carried out after the person concerned has given free and informed consent to it. This person shall beforehand be given appropriate information as to the purpose and nature of the intervention as well as on its consequences and risks. The person concerned may freely withdraw consent at any time.

Northern Cyprus, where the Turkish civil authorities operate, isn't recognized as a country by the international community and thus not easily bound by treaties.

EU-Cyprus seems to get around that treaty by letting the requirement of consent be made by the church.

Mary Petrou : Screening for beta thalassaemia: It was then found that 98% of at-risk couples detected just prior to marriage proceed to marry. Nevertheless, the annual number of new births of children with thalassaemia major has decreased almost to zero in Cyprus, because couples use the information on genetic risk in a variety of ways to obtain a healthy family.

It seems like we have a Christian church who pushes its members to abort some of their children in ways that would probably not be possible if done by a secular organisation.

We have a church that uses their freedom of religion to address a modern issue.