Andre and Jan is a deaf couple in a committed relationship. The two work at a University for the deaf and enjoy a tight-knit community. Andre and Jan are interested in becoming parents and have continuously tried for several years to no avail. Recent visits to fertility specialist have determined that Andre has low sperm count and therefore the couple cannot conceive. The doctor informs the couple that they can still conceive through other means like artificial insemination an option that Andre and Jan are hesitant about. The doctor must consider ethical issues surrounding the case and how to handle the delicate issue while helping the couple to conceive. Should he be the final decision maker or should he give the couple relevant information that will help them make the right decision? The couple desires a deaf child which also requires a critical evaluation from a medical perspective. The doctor is aware that the only way the couple can get a deaf child is by asking a deaf friend to donate the sperm or to advertise through online platforms. Andre and Jan should not be allowed to conceive a baby that is intentionally deaf because it violates the future autonomy of the baby while exposing the child to a disability that could affect her future life.
Deafness
Deafness is a condition that can be caused by genetic and environmental issues. Medically, deafness is a category of a disability, but socially, it is a cultural group forming a minority group. A couple that wishes to have a deaf child can use two approaches; prenatal diagnosis and pre-implantation genetic diagnosis. The first technique involves terminating the pregnancy if the embryo has not inherited the genetic mutations that cause deafness. The second approach consists of the selection of embryos with the genetic mutation that cause deafness. The physicians only transfer the embryo that has inherited the genetic mutation to the uterus of the woman. A third option involves the selection of a deaf partner. 1
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Ethical Issues in Andre and Jan Case
Violation of the Future Autonomy of a Child
Andre and Jan’s case raises serious issues concerning the autonomy of the child. The child, in this case, lacks autonomy and depends on the parent's decisions. Allowing the couple to decide the future of the child leaves the unborn child without an opportunity to make an autonomous decision. The unborn child, in this case, cannot decide on the best course of action. The future of the child depends on the couple who have already decided that they want a deaf child. However, the doctor still has a significant role in determining whether the couple should be the primary decision makers or consultants. The doctor, in this case, will take a course of action that best takes the interest of the child. This issue then raises a serious question, what is the best interest for the unborn child?
Selection
The question of selection continues to elicit mixed reactions especially if it involves disability. Duchesneau and Candace McCullough is a classical reference case that can give an insight into the current issue. The couple used the fifth generation deaf sperm donors in early 2000 to conceive two deaf children. The case raised several concerns including whether the couple was morally obliged to select a donor to increase their chances of conceiving children with hearing abilities. Similarly, the couple could have opted for PGD to select an embryo with hearing genes 2 . The case raised severe public outcry to the extent that England and Wales change the law governing assisted reproductive technology to include a clause that restricted its use for selecting for disability.
The question as to whether Andre and Jan have a moral obligation to select a deaf child needs to be critically analyzed. Bioethics and philosophers have been engaged in serious discussions concerning a parent's decision to choose for disability. Some of the arguments brought forward include the concern as to whether one is morally obliged to create the best child 3 . There are different opinions concerning the life of a deaf person and whether it is bad for a person to be deaf or not. Arguments against selecting a deaf child point out that the future of a child is denied when the parents opt for a deaf child hence denying them one of the five senses 4 .
Arguments in support or against the selection of a deaf child emanate from different quarters including the deaf community that holds a strong social model. According to this group, deafness is a culture and therefore it is appropriate to have a deaf child. However, those who are opposed to a deaf child believe that parents should not impose a life that they desire on the child since being deaf is not bad, but it is not one of the best experiences that a parent should wish their child. The best way to address the issue selection, therefore, is to consider it from values perspectives. One needs to determine the autonomy of the parent, the duties of the parent and the welfare of the conceived child and considerations for impersonal harm.
Information Sharing and Secrecy
Information sharing is a critical element in artificial insemination. According to the American society for reproductive medicine, there are four levels of donor information sharing that depends on the wishes of the recipient and the donor. However, concerns over the rights of the offspring have recently emerged with some arguing that such offspring have a right to meet and establish a relationship with the donor. There are also legal issues that the offspring should obtain information that relates to their genetic parents even though anonymity was previously established 5 .Secrecy concerning artificial insemination is a significant issue that can determine the outcome of the entire process. According to Ken R. Daniels, and Karyn Taylor, donors, prefer that their identity is kept secret.
Similarly, doctors are unwilling to take an active role in the process letting the couple to decide what they think will work best for them. 6 Similarly Brezina, Paul and Yulian 7 emphasize the preservation of anonymity where the sperm donor can choose to be anonymous or not.
Artificial Insemination and its Alternatives
Couples who are unable to conceive due to medical or other related issues can still raise a child through artificial insemination. According to Brezina, Paul, and Yulian (2012), 8 The use of donor sperm is a viable option for individuals who cannot have their child. However, artificial insemination can expose the couple to external pressure from friends and religious groups that believes that they should engage in other alternatives like adoption, guardianship, and fostering.
Conclusion and Recommendations
The physician should not allow Andre and Jan to conceive a baby that is intentionally deaf because it violates the future autonomy of the baby in addition to falling short of serious ethical considerations. A physician can influence the decision of the couple to have a deaf child or not but should not impose personal moral evaluation to the couple 9 . Andre and Jan's case needs to be analyzed from two critical perspectives. It is vital to determine whether assisting the couple to achieve a deaf child as desired can be supported by medical and moral standings. Similarly, there are serious concerns as to whether selecting a deaf donor will lead to the conception of a deaf child. Any discussion concerning this case must consider the interest of the child and their future anonymity and what is best for them. The doctor should, therefore, provide adequate information that can help the couple choose the best course of action taking the interest of the child as the key consideration. The doctor should therefore not support the conception of a deaf child as per the needs of Andre and Jan. The doctor should point out to the couple why they should not determine whether the child should be deaf or not and give a strong argument against the cultural belief held by the couple that deafness is a culture not a disability.
References
Brezina, Paul R., and Yulian Zhao. 2012. "The Ethical, Legal, and Social Issues Impacted By Modern Assisted Reproductive Technologies." Obstetrics and Gynecology International 2012: 1-7. doi:10.1155/2012/686253.
Fahmy, Melisa Seymour. 2011. "On The Supposed Moral Harm of Selecting For Deafness." Bioethics 25 (3): 128-136. doi:10.1111/j.1467-8519.2009.01752.x.
Inhorn, Marcia C., and Daphna Birenbaum-Carmeli. 2008. "Assisted Reproductive Technologies And Culture Change." Annual Review of Anthropology 37 (1): 177-196. doi:10.1146/annurev.anthro.37.081407.085230.
Ken R. Daniels, and Karyn Taylor, 1993. “Secrecy and Openness in Donor Insemination.” Politics and the Life Sciences , vol. 12, no. 2, pp. 155–170. JSTOR , JSTOR, www.jstor.org/stable/4235940.
Mand, C, RE Duncan, L Gillam, Daniels, Ken R., and Karyn Taylor. 1993. "Secrecy and Openness In Donor Insemination." Politics and The Life Sciences 12 (02): 155-170. doi:10.1017/s0730938400023984.
Simpson, Bob. 2004. "Acting Ethically, Responding Culturally: Framing the New Reproductive and Genetic Technologies in Sri Lanka." The Asia Pacific Journal of Anthropology 5 (3): 227-243. doi:10.1080/1444221042000299574.
Williams, Nicola Jane. 2017. "Harms To "Others" And The Selection Against Disability View." The Journal Of Medicine And Philosophy: A Forum For Bioethics And Philosophy Of Medicine 42 (2): 154-183. doi:10.1093/jmp/jhw067.
1 (Mand et al., 2009
2 Williams 2017
3 Williams 2017
4 Fahmy, Melissa Seymour, 2011
5 Brezina, Paul R., and Yulian Zhao, 2012
6 Ken R. Daniels, and Karyn Taylor, 1993
7 Brezina, Paul R., and Yulian Zhao, 2012
8 Brezina, Paul R., and Yulian Zhao, 2012
9 (Mand et al., 2009
