Prediction in reproduction. Genetic matching in assisted reproduction
One of the most controversial health domains where personal genetics services are flourishing is human-assisted reproduction, especially in relation to the potential of genetics to obtain predictive information about the future embryo (Suter 2018). Nowadays, the most radical development is occurring in matching gamete donors with recipients. Routine screening of gamete donors was traditionally performed through genetic family history questionnaires and, in second-line, through a limited genetic screening of the diseases known to be prevalent in the donor’s ethnic background or present in his/her family (as stated by the EU Commission Directive 2006/17/EC). More recently, these services have been extending, especially in Spain. Newer techniques allow to screen all individuals for hundreds of diseases – most with lower incidence or severities than are usually included in routine standard carrier screening (Mertes, Lindheim, and Pennings 2018). Also, the expanded carrier screening (ECS) in gamete donation is representative of the burgeoning panels of genetic “add ons”, which are used, for example, to predict and prevent certain complications during pregnancy due to the immune incompatibility between the fetus and the pregnant woman. Even if, in a strict sense, they are not DTC genetic testing, their clinical frame is very similar. All these tests are offered as out-of-pocket services that can improve the success rate of in vitro fertilization and/or have a healthier child. Considering that if both parents (or gamete donors) are healthy carriers, their children have a 25% possibility to get that condition, these tests also deal with genetic risks. Moreover, since the list of conditions detected increases constantly, testing is being extended to monogenic diseases with low penetrance or even polygenic ones.
This case study will mainly focus on Spain, currently the egg donation hub in Europe (Degli and Pavone 2019). However, we will also compare the Spanish situation to that of the Indian State of Telangana. In Hyderabad city in Telangana, assisted reproduction is part of flourishing international industry with clientele from Africa and South Asia, besides Europe and the United States. Multispecialty hospitals with dedicated IVF wings and an exclusive chain of IVF clinics provide a basket of reproductive genetic tests. Many of them actively encourage and introduce their clientele to the benefits of pursuing a ‘basket’ of tests and gene testing through gamete donors screening and monogenic, aneuploidy and structural rearrangement preimplantation genetic testing (PGD). Marketed both as circumventing multiple miscarriages and detection of chromosomal irregularities in the fetus, PGD has become an important component of IVF in urban India. Legally grey spaces continue to mark the ways in which IVF and other assisted reproductive technologies operate in India, with a pending bill waiting for ratification by the Indian Parliament—to the benefit of DTC genetic testing in IVF clinics.
Degli Esposti, Sara, y Vincenzo Pavone. 2019. « Oocyte provision as a (quasi) social market: Insights from Spain ». Social Science & Medicine 234: 112381. https://doi.org/https://doi.org/10.1016/j.socscimed.2019.112381.
Mertes, Heidi, Steven R. Lindheim, y Guido Pennings. 2018. « Ethical quandaries around expanded carrier screening in third-party reproduction ». Fertility and Sterility. Elsevier Inc. https://doi.org/10.1016/j.fertnstert.2017.11.032.
Suter, Sonia M. 2018. « The tyranny of choice: Reproductive selection in the future ». Journal of Law and the Biosciences 5 (2): 262‑300. https://doi.org/10.1093/jlb/lsy014.