Ethical Issues in Disclosure of Donor-Assisted Children

It is ethically appropriate to inform children who are conceived with an egg or sperm from a donor of their biological origins and the identity of that donor. Discuss.

Necessity is the mother of invention, so goes a common saying. Man has always sought to invent and evolve problem solving skills in a bid to counter or solve the problems and challenges that plague his/her life. This has led to the wide use and acceptance of conception of children through alternative means. Health reproduction has advanced from assisted reproduction basically using donor sperms to more advanced donor gamete methods. These include donor sperms, donor eggs and embryos(Blyth et. al., 2010). Third party reproduction is also widely accepted as surrogate and gestational carriers are employed, be it in isolation or combined.

These cutting edge health reproduction alternatives have raised numerous queries as the public grapples with how best to manage them. The main question is that of disclosure to the children conceived using these methods. The ethical issues faced due to disclosure no longer lie on whether or not the children should be told of their origins, but more importantly, what the parents should disclose and at what age or time (Macaldowie, et al., 2013). This essay seeks to advance the opinion that it is not only ethically appropriate, but also important to disclose this information to the child.

The American Society for Reproductive Medicine (ASRM) ethics committee published a report in March 2004. It sought to offer support to the disclosure by parents of children conceived using donor gametes(Blyth et. al., 2010). The committee appreciates that disclosure is a personal decision which cannot be tailor-made to fit all. However, it goes on to assert that there are many underlying advantages in early disclosure as this gives the child ample time to process and absorb the information. This will go a long way in the proper self-image formation of the child, as s/he knows who s/he is and where s/he came from.

One of the major ethical issues that arise from donor gametes is the child’s human and legal rights. Since these rights universally accorded to every individual, it would be a major illegality not to disclose to the child his personal information. The committee advances that it is close to impossible for one to develop an identity without knowledge of his/her biological origin. This point can be fully supported by evidence gathered from adopted children(Blyth et. al., 2010). The earlier a child learns of their roots and origins, the easier it is for her/him to form a proper identity and self-image.

Family secrecy has long been seen as a negative influence in the bonding and general ambience of the home. Secretive families raise insecure and ill-developed children due to the adverse effects that the secrets have on self-esteem and the child’s psychological health. Proper knowledge of oneself is critical to the proper functioning of an individual in the greater social space. Ensuring that the child knows who s/he is, the origin and circumstances surrounding his/her conception will only serve to improve the child’s image (Macaldowie, et al., 2013). Disclosure conveys a message of acceptance. The children will know that regardless of their origin, the parents and the rest of the family have accepted them fully as they are. This will increase personal acceptance and develop a social child who can relate well to the rest of the society and be a fruitful member.

Advances in the fields of Medicine and Healthcare have made disclosure a necessity. It is almost impossible to offer the appropriate medical care needed in certain advanced or critical cases. Some psychiatric treatments also require the knowledge of a patient’s genetic history so as to offer the best possible care (Macaldowie, et al., 2013). Without disclosure, a child born using donor gametes may jeopardize his/her life due to ignorance of genetic history. This may lead one not to seek early medical attention for genetically inherited complications such as sickle cell anemia. Other psychiatric complications may also go untreated or worse still undiagnosed due to lack of understanding of the complication(Blyth et. al., 2010).

Children with bi-polar syndrome or other mood disorders may suffer many years of untold anguish in silence due to lack of knowledge of their genetic history (Mac Dougall, et al., 2007). Proper knowledge of the donor will go a long way in ensuring that ailments that may be inherited are managed or treated early. This will ensure that the children have a productive life that is not curtailed by underlying ailments which in essence are a ticking time bomb.

One major ethical issue that most parents hold onto is that of their own privacy. Some parents contend that disclosure to their children will amount to a contravention of their own right to privacy. This argument has been proven to hold no weight as countries such as Austria, Sweden, Switzerland, the Netherlands and a few states in Australia have already enacted laws that make it mandatory for donor-assisted offspring to gain access to their genetic history as soon as they legally come of age. The UK also followed suit in passing similar laws. These laws apply to all donor-assisted children conceived after April of 2005(Blyth et. al., 2010).

Adverse effects of non-disclosure are a major driving force in the campaign for disclosure of donor-assisted reproduction. June 2002 saw the ASRM publish guidelines on the donation of gametes and embryos. This report suggested that gamete donations ought to be limited to 25 pregnancies per every 800,000 population cohort. This was aimed at reducing the risk of consanguinity as inadvertent consanguinity may occur if one were to donate to a group of families whose offspring were ignorant of their genetic history and heritage (Macaldowie, et al., 2013). This is a critical health complication that could be averted through timely and proper disclosure.

Whereas some non-disclosures do not have any adverse physical implications, non-disclosure is sure to cause mental health problems. The probability of keeping a gamete donor a secret for entire lifespan of the offspring is so low it tends to zero (Mac Dougall, et al., 2007). Since the family exists in a society, the parents cannot guarantee that the child will not learn of his/her genetic heritage, be it accidental or intentional. The child’s mental health would be damaged irreparably if s/he learnt of his/her origin by accident or through inappropriate means.

One may know of a genetic disease later on in life due to the disease’s fatal progress, owing to the non-genetic parent’s lack of a DNA match. This complication may also occur in a different light, as a parent suffers a genetically hereditary disease(Blyth et. al., 2010). The donor-assisted offspring may undergo untold mental anguish fearing that one day the disease will come of age and manifest itself. Proper disclosure could avoid these situations or even lead to the proper management of the same.

Past cases have shown children learning of their conception methods through relatives owing to a slip of the tongue, custody battles during divorce, or a parent disclosing this information on the deathbed. These improper methods of disclosure will have a lasting negative effect on the child’s mental, psychological and even physical health. The child may feel that the family has been untruthful and lead the child to question everything in his/her life. S/he may feel that their whole life has been a long lie up to that moment in time. This leads them to doubt everything else, leading to a crisis of identity, image and personality (Macaldowie, et al., 2013).

When accidental disclosure happens to donor-assisted offspring in their adulthood, feelings of anger, betrayal, depression and loss may arise. This may lead to the development of a deep loathing for their parents and family as they feel that they cannot trust them anymore. “If they kept such a crucial and critical piece of information from me all that time, what else are they not telling me? What else have they been lying to me about?” This leads to a personal crisis which can be avoided by early and proper disclosure (Macaldowie, et al., 2013).

Families have certain set values which define them. Successful families embrace openness and honesty as basic foundation stones for the home. Dishonesty and secrecy are highly discouraged as they breed suspicion and disunity. Parents who take the responsibility of disclosure ensure that they build their families on the right foundation. This is through taking hold of the decision on when to disclose this information to the child and also deciding the amount of information to disclose. Disclosure does not have to be total at one time, but it may be gradual, informed by the child’s age, mental development and emotional quotient. Different children will need to he handled differently (Mac Dougall, et al., 2007).

After all is said and done, it is important to remember that the decision to disclose lies squarely with the parents. Some parents may feel that this is a “Don’t Ask, Don’t Tell” territory where information is on a need to know basis and one only tells what is asked(Blyth et. al., 2010). Other parents may feel ashamed of their inability to conceive or father an offspring. This may be informed by a dilapidating of loss of the child’s approval and loyalty due to knowledge of the parent’s inadequacy. Parents may also fear the child’s reaction upon discovering that one of their parents is not actually their ‘real’ parent. They fear that this may bring up more problems than it does solve, hence the decision to keep the matter a secret (Mac Dougall, et al., 2007).

Social conformity is big in the modern day. We all want to fit in and not feel like an outcast. Some parents may fear that the children will not be accepted among their friends due to their differences in conception. These external pressures may even extend to the family members who may not accept the reproduction method used (Macaldowie, et al., 2013). They may turn their ill-feelings to the child, mounting untold burdens on the child’s weak soul. This may have life-altering changes which may adversely affect the child’s future development and integration into society. However, the case for disclosure is stronger than that of non-disclosure (Mac Dougall, et al., 2007).

 

References

Blyth, E., D. Langridge, and R. Harris, 2010. Family building in donor conception: parents’ experiences of sharing information. Journal of Reproductive and Infant Psychology, 2010. 28(2): p. 116-127.

Macaldowie, A., et al., 2013. Assisted reproductive technology in Australia and NewZealand 2011, 2013, National Perinatal Epidemiology and Statistics Unit, University of New South Wales: Sydney.

Mac Dougall, K., et al., 2007. Strategies for disclosure: How parents approach telling their children that they were conceived with donor gametes. Fertility and Sterility, 2007. 87(3): p. 524-533.