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Cystic fibrosis carrier screening in Veneto (Italy): an ethical analysis

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Abstract

A recent study by Castellani et al. (JAMA 302(23):2573–2579, 2009) describes the population-level effects of the choices of individuals who underwent molecular carrier screening for cystic fibrosis (CF) in Veneto, in the northeastern part of Italy, between 1993 and 2007. We discuss some of the ethical issues raised by the policies and individual choices that are the subject of this study. In particular, (1) we discuss the ethical issues raised by the acquisition of genetic information through antenatal carrier testing; (2) we consider whether by choosing to procreate naturally these couples can harm the resulting child and/or other members of society, and what the moral implications of such harm would be; (3) we consider whether by choosing to avoid natural procreation carrier couples can harm current or future individuals affected by cystic fibrosis; (4) we discuss whether programs that make carrier testing available can be considered eugenic programs.

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Notes

  1. Both PGD and heterologous fertilization became illegal in Italy in 2004 (Law n. 40 of 19 February). Part of the law has recently been declared unconstitutional (Italian Constitutional Court, sentence no. 151/2009). With regards to the Veneto study, the couples that got a double positive result after 2004 could not decide to undergo PGD or heterologous fertilization in Italy, but the option of traveling abroad to access these services remained available.

  2. This is legal in Italy (Law n. 194 of 22 May 1978, article 6).

  3. It is also possible to argue that bringing to life individuals affected by a severe disability is bringing to life individuals whose opportunities will be impaired and who thereby will have fewer chances—on average—to enter into mutually beneficial relationships with other humans and to contribute positively to society. Benefits and contributions should not be thought only or primarily in financial terms. But the point still stands when one takes on a broader, and more relevant, understanding of benefits and contributions.

  4. Independently of the harm caused to other individuals, it is possible to argue that carrier couples have moral reasons to avoid natural procreation by using Parfit’s Q principle: “If in either of two possible outcomes the same number of people would ever live, it would be worse if those who live are worse off, or have a lower quality of life, than those who would have lived” (Parfit 1986/2003:360) or some other non-person-affecting principle (Buchanan et al. 2000: 249). Such principles do not require that any actual individual be made worse off—harmed, in the comparative sense. They only require that the quality of life of the CF-affected child resulting from the couple’s choice to procreate naturally be lower than the quality of life of the CF-free child resulting from the couple’s choice to avoid natural procreation. Whether such principles can be properly justified is a controversial matter.

  5. A measles vaccination campaign is designed to decrease the likelihood that the population will in the future contain measles-affected individuals. But it does not express a negative value judgment on individuals who are currently or will in the future be affected by measles. In the case of measles, though, the prevention of the disease does not involve an attempt to avoid the coming into existence of certain individuals. It only involves an attempt to prevent extant or future individuals from acquiring the condition. The case we are discussing is different.

  6. See what was said in Sect. 5 about the identity-determining power of reproductive choices.

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Acknowledgments

We want to express our sincere thanks to Rosalind Gunby, Pascale Romano, and Christopher Wareham for their invaluable help in improving the style of the paper and to Dr. Franco Zacchello, Dr. Luigi Picci, and Dr. Carlo Castellani for their first-hand testimonies. We finally thank Dr. Carlo Castellani for his precious comments on a first draft of this paper.

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Correspondence to Tommaso Bruni.

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Bruni, T., Mameli, M., Pravettoni, G. et al. Cystic fibrosis carrier screening in Veneto (Italy): an ethical analysis. Med Health Care and Philos 15, 321–328 (2012). https://doi.org/10.1007/s11019-011-9347-7

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