Arrays in postnatal and prenatal diagnosis: An exploration of the ethics of consent

Abstract

ABSTRACT:The introduction of genome-wide arrays in postnatal and prenatal diagnosis raises challenging ethical issues. Here, we explore questions with regard to the ethics of consent. One important issue is whether informed consent for genome-wide array-based testing is in fact feasible, given the wide range of possible outcomes and related options. The proposed alternative of "generic consent" will have to be studied in practice. From an ethical point of view, the question is whether consent would still be sufficiently "informed" in a generic approach. Another issue that has not yet been given much attention is how far parents, or pregnant women and their partners, should be allowed to determine the range of possible outcomes that will or will not be reported back to them. The scope and limits of parents' and prospective parents' right to know or not to know are far from clear. The complex normative issues on the content and weight of these rights can only be answered by taking full account of the rights and interests of all the parties involved: prospective and actual parents, children, and relatives. This paper is the result of a working group meeting preceding the European Society of Human Genetics 2011 Conference, where these issues were addressed.

The introduction of arrays in prenatal diagnosis: A special challenge

“…Counselors should provide clear information, which is easy to understand for the future parents and in a nondirective way, to help them to make their own decision based on the ethical concept of the fetus as a patient. Although there are no autonomy-based obligations to the fetus, it will later become a child and thereby achieve an independent moral status [Chevernak and McCullough, 2011;Dondorp et al, 2012]. Given these ethical considerations, counseling for genome-wide array analysis in the prenatal setting is difficult and challenging.…”

Advantages of expanded universal carrier screening: what is at stake?

“…7 The concept of generic consent emphasises that too much information may undermine the process of informed decision-making as much as too little information. Yet, to avoid ending up with what is in fact 'uninformed consent', 25 quite some information must still be shared. The counsellor needs to address various health-related issues, for instance concerning treatment options, life expectancy and quality of life.…”

Genetic Counseling and Genetic Tests Ethical Challenges

“…A contentious debate in prenatal diagnosis is abortion which is not a good mental experience for the mother [3,22,25].…”

“…In such situation, early monitoring of food consumption may be beneficial. Also, in some predisposing familial cancer syndromes, early treatment and preventive surgery can take place if there are early indications [25].…”

“…People who use this technology view children as tools or consumers. In addition, children who are created this way, have no idea about their tissue donation to their siblings [25].…”