The Ethical Implications of Pre-Implantation Genetic Diagnosis for Non-Medical Use

Introduction and Background

Pre-implantation genetic diagnosis (PGD) describes early embryo testing after vitro fertilization and it was intended to detect genetic defects including sex linked, single gene, and chromosomal disorders (Panahi & Fahami, 2015). According to Shaia et al. (2020), PGD prevalence in the US was four percent in 2005 and in 2015 it increased to 22 percent. Apart from medical PGD services, more assisted reproductive technology (ART) clinics are now offering it for non-medical uses. Notably, the non-medical PGD services include screening embryos for desired sex, personality, and physical traits. For instance, patients can select the sex, humor, intelligence, athleticism, eye, skin, and hair color of their offspring (Wilhelm et al., 2013).

Sex selection is the most common form of PGD non-medical service. Therefore, this paper will mostly focus on non-medical sex selection. Capelouto et al. (2018) found out that 72.7 of ART clinics in this country are already providing non-medical PGD sex selection. The non-medical use of PGD has generated ethical debates both in the medical and general population. This paper will analyze the implications of autonomy, beneficence, non-maleficence, and justice ethics of the utilization of non-medical PGD uses. Moreover, it will assess the stakeholder’s perspectives of the issue and the implications for health care provider groups.

Analysis of the Four Primary Ethical Principles

            Supporters of non-medical PGD services argue that it promotes parental and reproductive autonomy. They claim that parents should have the autonomy to choose the sex, personality, or even physical traits of their children and PGD helps them achieve that need. For instance, most of the patients that use non-medical PGD sex selection do it to balance their families (Capelouto et al., 2018). A study by Sindiani et al. (2021) showed that couples were using PGD to select male embryos because they already had three or four female children.  The parents wanted to attain family balancing by having children of both genders.

On the other hand, Browne (2017) pointed out that sometimes non-medical sex selection sabotages reproductive autonomy. Since sex and gender are not synonymous, the argument that parents selecting the sex of the embryo leads to parental autonomy is not always true (Browne, 2017). Gender is a social construct of how male and females should behave. Conversely, sex is the biological identity assigned at birth. In this century, some children are not identifying with the gender the society expects them to follow. Besides, other children are becoming transgender. As such, eventually, some patients do not get the gender or even the sex they thought they were getting when choosing their desired embryo sex. Such cases indicate that non-medical sex selection could actually undermine the parents’ reproductive autonomy.

Research shows that non-medical PGD uses can promote beneficence. Decreased fertility and the desire to decrease the size of the family are some of the major reasons that influence couples to seek PGD non-medical sex selection (Mukherjee et al., 2012). As a result, patients struggling with fertility issues benefit from having an opportunity to have a child of the desired sex. Additionally, some couples have children of the same sex but they desire a child of the other sex. However, if they continue to have more children without the assistance of PGD sex selection, they might not get the desired sex. Hence, such couples would eventually have a higher number of children than they planned. PGD is beneficial to people who want to have specific number of children of both sex.

Regardless of non-medical PGD uses enhancing healthcare beneficence, it can violate non-maleficence ethics. As mentioned earlier, PGD sex selection for medical reasons challenges reproductive autonomy in some cases. The sabotage of reproductive autonomy also goes against non-maleficence. Furthermore, non-medical sex selection can also have negative effect on the patients’ emotions. In their study, Kirshenbaum et al. (2019) found out that the likelihood of getting the desired sex when using non-medical PGD is only 35 percent. Another research by Mukherjee et al. (2012) also had similar findings, as it concluded that choosing the sex of the embryo does not have the anticipated success rate. When parents do not achieve the desired sex, they experience emotional and mental pain. Some might even fail to love the child as much as they would have if the child was of the desired sex.

Non-maleficence is also observed when offering non-medical PGD services since it results in the destruction of healthy embryos.  When clinics are performing biopsies on many cells to select the desired sex, they are likely to destroy healthy embryos of the undesired sex (Panahi & Fahami, 2015; Sindiani et al., 2021). Sex selection for personal and social reasons is also associated with the imbalance of gender in the community (Sindiani et al., 2021). For example, the sex ratio (SER) in the US population moved from 105 to 110 after using non-medical PGD because it increased the probability of having male children (Shaia et al., 2020). Mukherjee et al. (2012) noted that sexism and gender imbalance were likely to get worse when PGD non-medical sex selection becomes available in the whole world.

Mukherjee et al. (2012) pointed out that PGD is expensive; hence, a high socioeconomic status is one of the factors influencing the utilization of the technology for non-medical sex selection. Panahi and Fahami (2015) also noted that elective sex for non-medical reasons is not covered in insurance. As such, PGD for non-medical uses violates justice ethics since it is not equally available to patients of all socioeconomic backgrounds. Low-income individuals who want to select the sex or other traits of their offspring cannot benefit from PGD.

Stakeholder’s Perspectives

The stakeholders interested in the non-medical PGD are patients, physicians, ART (assisted reproductive technology) clinics, and reproductive organizations such as American Society of Reproductive Medicine (ASRM), International Federation of Gynecology and Obstetrics (FIGO), and the American College of Obstetricians and Gynecologists (ACOG). The patients are the individuals and couples seeking non-medical PGD. The physicians are the obstetricians and gynecologists examining and offering the PGD services in ART clinics. The ASRM is a non-profit organization focusing on reproductive medicine. The ACOG is the US organization for obstetrics and gynecology physicians. Lastly, the FIGO is a global NGO for obstetricians and gynecologists. The three healthcare organizations offer their opinions and set guidelines about assisted reproductive technology including PGD.

Patients have mixed perspectives about non-medical PGD services. Patients who are interested in balancing their family support non-medical PGD. According to Salame et al. (2019), the need for family balance is a major reason for using PGD for sex selection. Maternal interest and plans to have small family size also motivate patients to support PGD sex selection (Mukherjee et al., 2012). Conversely, most patients think that PGD for non-medical motives is unethical. A study by Salame et al. (2019) in Middle-Eastern countries revealed that a majority of religious and cultural people do not support PGD non-medical sex selection. In another research, most Americans supported medical PGD but only a few people thought non-medical PGD is necessary (Winkelman et al., 2015). Patients are part of a society; thus, the studies are a reflection of the patients’ perspectives about non-medical PGD. Specifically, most patients view non-medical PGD as unethical.

Most ART clinics in the United States have a positive perspective on non-medical PGD services. Notably, data reveals that 72.7 percent of ART clinics in the US are currently providing PGD sex-selection for non-medical motivations especially family balancing (Capelouto et al., 2018). The high percentage indicates that ART clinics think it is ethical for patients to select the sex of their offspring. US physicians also support the technology considering the high number of ART clinics offering PGD services for non-medical reasons. Nevertheless, physicians in other countries consider non-medical PGD unethical. Specifically, a majority of reproductive medicine specialists in Germany have a negative ethical attitude towards offering PGD for non-medical uses (Winkelman et al., 2015). Healthcare organizations have varying perspectives about the matter. While the ASRM views the selection of the sex of the embryo for non-medical reasons as ethical, the FIGO and ACOG consider the practice unethical (Salame et al., 2019).

Implications for Health Care Provider Groups

The issue has various implications on the physicians and nurses working in assisted reproductive technology (ART) clinics. The physicians are the obstetricians and gynecologists in the ART clinics providing preimplantation genetic diagnosis (PGD). They meet with the women or couples who desire to select their child’s sex for social or personal reasons. Therefore, they identify the sex of the embryos and implant it. The nurses work with the obstetricians and gynecologists. Both the nurses and the physicians offer supportive counseling to the patients.

The non-medical PGD uses has implications on the physicians in that they should make sure patients do not have unrealistic expectations of the service. As Browne (2017) mentioned, children might not identify with the expected gender even when patients use PGD for non-medical sex selection. Thus, physicians should inform patients of such results before providing the service. In the US, the popularity of sex selection for non-medical reasons has been on the rise (Capelouto et al., 2018). Therefore, this means that physicians must be prepared to offer the service to more patients each year. Another information that physicians need to share with the patients is that sometimes PGD for non-medical sex selection is not 100 percent successful (Kirshenbaum et al., 2019). Physicians will be respecting the patient’s autonomy by disclosing the information.

Nurses working in ART clinics offer supportive counseling to patients receiving PGD procedures (Quinn et al., 2014). The research findings in this paper implies that nurses involved in PGD procedures need to familiarize themselves with all the associated ethical issues. During the counseling sessions, nurses must ensure the patients understand the timeframe, success rates, financial, and emotional costs of PGD. For instance, PGD is highly costly and insurance does not cover the service. As such, patients especially those from low income backgrounds should be aware of the costs before starting the PGD procedures just to select their desired sex of the child. Doing so promotes the beneficence, autonomy, and non-maleficence ethics.

Conclusion

With the increasing prevalence of PGD for non-medical reasons in the US, the technology is evoking ethical issues. The most prevalent non-medical use of PGD is sex selection. Firstly, by allowing patients to select their child’s sex for family balancing, PGD promotes parental and reproductive autonomy. Nonetheless, it can also sabotage autonomy when the child does not conform to the expected gender. Moreover, non-medical PGD sex selection enhances beneficence by assisting patients to reduce family size. Gender imbalance and destruction of healthy embryos are PGD issues associated with non-medical sex selection that violate non-maleficence. The service also breaches the justice ethics because it is costly and not all patients can benefit from it.

Although the public mostly think that selecting the child’s sex for non-medical reasons is unethical, more patients are continuing to seek the service. Additionally, the ASRM, US physicians, and ART clinics support the procedure. However, physicians in other countries, the FIGO, and ACOG do not recommend PGD for non-medical motives. Thus, nurses and physicians must ensure patients have all the positive and negative information about the service.

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