NADD Bulletin Volume V Number 4 Article 2

Complete listing

Of Dreams and Nightmares: Cloning and Developmental Disabilities

Stu Smith, Ph.D.

In 1997, the first animal ever cloned from a nonsex cell of another adult animal was presented to the world. For some, Dolly’s birth created excitement and hope; for others, fear of imminent human cloning. While still allowed in some countries, research on the cloning of humans is illegal in others, and president Bush has called for a halt to its federal funding. Still, privately funded research is permitted, and the first human embryo was cloned from adult skin cells in November, 2001 by the Advanced Cell Technology company. Though only a 6-cell embryo was cloned, and the development of stem cells for therapeutic purposes failed, many fear this is just one step closer to the eventual cloning of humans by somebody, somewhere. The efforts by Clonaid, a company founded by people who believe that we are a mixture of human and alien genes, makes some doubt the wisdom of scientists.

The most controversial stem cell and cloning issues relate to (1) whether the procedure is for therapeutic or reproductive purposes, (2) the safety of the procedure, and (3) when human life actually begins. Because of personal moral and religious beliefs about the latter, many people want to end further research with embryos. However, many do not view the relatively few embryonic cells that exist during the first few days or weeks of embryonic development as a real human being yet. To them, the benefits of using stem cells to produce healthy tissues and organs for therapeutic purposes is extremely worthwhile.

Since many moral, ethical, and religious issues surrounding stem cell and cloning research can already be found in relatively nontechnical books by Silver (1998) and McGee (2000), the following will stress some of the psychosocial, legal, and emotional issues that may have to be carefully considered

Stem Cells and Cloning: What are They?

Cell division during the first few days of embryonic development produces stem cells that are not yet specialized and still have the potential to become any organ or tissue. If collected and allowed to divide indefinitely in culture, they can theoretically be prompted to become any type of specialized cells that are needed. For example, if injected into a patient, they might replace damaged cells in the brain or heart and improve or save a life. If allowed to grow into tissues or organs, much needed transplants would become more readily available. Specialized stem cells also have been found in adults, but current research indicates they are not plentiful, are difficult to isolate and purify, and might be limited in the number of tissues and organs they can produce. However, many who oppose the use of stem cells derived from a human embryo or fetus, may accept their use for therapeutic medical purposes if obtained from adults. Enough people recently viewed the potential benefits to be so valuable that President Bush approved federal funding for limited research. Ideally, future research will result in ways to improve adult stem cell effectiveness and preclude the need of an embryo or fetus.

  A major problem in using stem cells from an embryo or fetus is rejection by the recipient’s immune system. However, this would not be a problem with cloned stem cells, since cells with identical DNA would be available. Cloning occurs when the DNA from the nucleus of an egg is replaced by the DNA from a body cell, typically (though not necessarily) from another person. The egg is then electrically or chemically “tricked” into cell division. This may result in embryonic cells that are genetically identical to those of the body cell, as well as stem cells for production of new tissues, organs, or possibly (someday) even a “genetically identical” person if the egg was implanted in a uterus. Though often criticized by opponents as an immoral “harvesting” of embryos for “spare parts”, religious and ethical tolerance toward stem cell and cloning research for therapeutic medical purposes seems greater than for reproductive purposes.

Of Hopes and Dreams: Why Stem Cells and Cloning?

 Therapeutic Hopes. The therapeutic potential for stem cells to produce healthy cells that could replace damaged cells, or even increase or enhance undamaged cells that are too few in a person, offers great hope for those affected by the more common and understood diseases such as diabetes, Alzheimer’s, cardiovascular disease, emphysema, and leukemia. Stem cells might be able to become dopamine cells and replace the nonfunctional ones in Parkinson’s disease; or even replace dead or dysfunctional central nervous system cells and “cure” seizure conditions and paralyses. With the Human Genome Project’s potential for discovering genetically related biochemical and neurological defects associated with various developmental disabilities, stem cells might be able to replace defective cells in the embryo or fetus and prevent or lessen a disability. Supplemented by brain imaging studies, stem cell and cloning research offer hope for minimizing or “fixing” problems postnatally, as well. Some common developmental disability syndromes with genetic roots include Down, Fragile X, PKU, Prader-Willi, and Rett. Autism, Cerebral Palsy, and Spina Bifida may also benefit, as might various communication and learning disorders. In the mental health arena, psychotic disorders such as bipolar disorder and schizophrenia, as well as nonpsychotic disorders such as depression, severe anxiety, and ADHD might be helped as clearer biological causes are discovered. Stem cell and cloning research may also result in methods more acceptable to those with moral and ethical conflicts. For example, ways may be found to make adult specialized stem cells revert back to embryonic unspecialized states.

Reproductive Reasons for Cloning. Over the past several decades, millions of people have had a child through noncoital techniques such as the artificial insemination of sperm, in vitro fertilization (“test tube babies”), and use of a surrogate (another woman’s uterus). Millions more have chosen adoption. Cloning would be one more option for (1) infertile couples who do not want to use the sperm or eggs from a nonspouse, (2) elderly couples who want to avoid the higher risks of a late age pregnancy, (3) couples with a high risk of a heritable problem, (4) same sex couples, (5) couples who want another excellent child like the one they have or who is dying, and (6) single males or females who want to be a sole parent.

Of Conflicts and Nightmares: Why Not Stem Cells and Cloning?

To McGee (2000) and Silver (1998), the need to reproduce and parent is so strong for some people that if cloning a human becomes possible, it definitely will occur. Yet, several states and countries have banned this sort of research, and various religious and political leaders have voiced strong objections. The U.S. House of Representatives has voted to ban research on human cloning, and the White House has urged the Senate to do the same. Still, cloning is legal in many countries and can be funded privately.

Although cloning is offensive to some for religious or moral reasons, it is also opposed for safety reasons. Successful cloning has occurred with a variety of animals, but not without a very high error rate. Dolly was the final product of the cloning of 277 eggs and the death of many embryos and fetuses. Some “successes” have had problems with weight gain, and some may be aging rapidly. Over time, other problems might arise. Errors can occur during (1) extraction of DNA from the egg, (2) placement of the body cell’s DNA into the egg, (3) electrical or chemical stimulation of cell division, or even (4) placement of the egg cell into the uterus. Although the most errors would occur during the earliest years of research, errors would continue to occur until the procedure was ever “perfected.” It should be noted that there are also risks with stem cells that are used just for therapeutic purposes. Errors during their collection, development, or placement into a recipient might also result in physical or cognitive disabilities, perhaps during the developmental period.

If humans could be successfully cloned, would a certain error rate ever become acceptable? How many destroyed embryos and fetuses would be tolerated? More germane to the field of developmental disabilities, how many would be defective at birth or during the developmental period? Parents would pay a heavy emotional price, as well as related financial expenses; especially if those opposed to cloning lobbied to restrict or end government funding. If funding continued, how would this affect the funding for the noncloned developmentally disabled, given budgetary limitations?

Possible Repercussions of Cloning: Food for Thought

Despite cloning’s potentially great benefit for some people, there are many issues to consider, even if the cloned newborn was perfectly healthy. If disabled, there are additional issues. Because humans have not yet been cloned, the following is speculative and is meant to raise awareness of some very important questions and consequences that might have to be addressed.

Social Issues. Many moralists agree that the safety and best interest of the cloned child is primary. The parent should be obliged to parent the child “no matter what.” Three common major psychosocial concerns are that clones will be harmed by the (1) prejudicial attitudes of others, (2) expectations of the parents, and (3) awareness of their origins. A sense of these is offered in the recent film A.I. (Artificial Intelligence) by Kubrick and Spielberg. Though not a clone per se, the very attractive “robot” boy was nearly human; but not quite. This resulted in a variety of personal and social reactions that would likely fit a healthy cloned child as well. If unhealthy or disabled, reactions would probably have been even more negative. Following are some of the many questions and conflicts that might emerge within a clone’s social environment, whether disabled or not.

Parents: Who the “real parent” is can become complicated, confusing to the clone, and strain a relationship; especially when the couple are not getting along well or are having child rearing disagreements. If married: (a) obtaining the egg from the wife and the body cell from the husband would minimize conflict. However, the clone would only be the husband’s genetic copy; (b) if the wife provided both cells, only she would be the biological parent; (c) if the egg was donated by a third party, the uterus by the infertile wife, and the body cell by the husband, all three might claim to be a parent; (d) if the egg and uterus were donated by a third party, and the body cell by one spouse, the other spouse would not be a biological parent; (e) if the couple were not married, but both partners contributed a cell, conflicts would be minimized. Still, the child would be the “genetic copy” of only the body cell donator; (f) if the couple were gay men and a third party provided the egg cell and uterus, only the man who donated the body cell would be a biological parent. Conflict would be less for two gay women if one donated the egg and uterus, while the other donated the body cell. Finally, there would be less conflict yet about parentage, if a single man donated the body cell and hired a woman to provide the egg and uterus, or if a single woman cloned herself . However, these might result in the most social disapproval.

Siblings: Clones with siblings might experience a variety of conflicts, depending on variables such as the number of siblings, sex and age differences, emotional maturity, and reaction of the siblings’ friends. It would be critical for parents to present a united front and total acceptance of the cloned child, but given parent scenarios such as those above, there are apt to be occasional blunders. These would affect some siblings’ attitudes and behavior, especially those with qualms already. The risk might be even greater if siblings felt the clone was the parents’ favorite child. Some young (and older) children have limited tact and would say things that are hurtful. Given that even “natural” siblings often quarrel among themselves, it would be a rare family that could avoid the pain most clones would occasionally experience with their siblings.

Relatives, Close Friends, and Others: If they have reservations themselves, nonfamily members would be prone to even more “slips”. Although most close relatives and friends would try to be careful, those more distant or antagonistic might be less cautious and maybe purposely hurtful at times. Even if banned from any more visiting, the damage would already have been done. Casual neighbors and acquaintances, as well as their children, would have little reason to be tactful or hide their prejudices.

Given that the larger community includes people who abhor cloning, the potential for hurtful remarks and behaviors is vast. This would likely be most intense during the many years that cloning would be uncommon, possibly feared, and still opposed for moral and religious reasons. Would the family be shunned, insulted, or discriminated against by their church and congregation? By preschool day care providers and children? By many teachers during the school years? By the police and courts, especially if involved in a felony? By doctors, nurses, and other providers of physical and mental health services? By patrons in stores, restaurants, and entertainment venues? By prospective employers? By insurance companies? By real estate agents?

The Clone’s Self-Esteem. Since cloning is so expensive and would serve the reproductive needs of only a small minority, it would be a long time (if ever) before it became common enough to change current attitudes. Like many other minority group members who have had a long road to acceptance or tolerance, the clone’s sense of safety, security, and esteem would likely be strongly affected.

Unscientific surveys, such as those on the Internet or in magazines, suggest that most people feel that cloning should be banned. Although the sample of subscribers may not be representative of the overall American population, and the cloning questions were broad or vague, a recent MSN Internet survey of 100,000 people indicated that rejection would be very common. This was also suggested by a preliminary 21 item survey that I recently gave to 24 people from three states. About half were professionals involved with developmental disabilities. Cloning organs for a variety of reproductive reasons was rated as rarely or never acceptable by about 80% of the respondents. About 65% agreed that harm would be caused by prejudice, expectation of parents, feeling like a “copy or substitute,” confusion over who the “real parent” is, and marital strains. Even cloning organs for therapeutic purposes was rated as rarely or never acceptable by 40%.

If aware of the potential sources of harm, parents would be faced with many difficult decisions. Since various health providers were likely involved during cloning, pregnancy, and delivery, how confidential would the situation remain? Should the family move to a large city for more anonymity? Home school the child? Tell their most trusted, secretive friends, relatives, and other family members? Even tell the child? If so, what should be said and how? What if the parents disagree? If only the clone was ever told, such a secret would be a huge burden. There would always be the fear of being found out and the ensuing publicity, rejection, and possible harm. If held secret from the child, what would happen if it was later discovered? If cloned for therapeutic transplant purposes, would there be feelings of being a “spare part” and of “being used”? Feelings of not really being human, as well as envy and resentment toward “real humans” (including the parents)? Would there be a fear of disability or death due to genetic errors just waiting to be expressed? Wanting to feel more accepted and secure, would there be feelings of extreme pressure to live up to parents’ or other’s expectations?

Issues related to religion, dating, and becoming a parent would also have to be addressed over time. For example, some people might be cold or rejecting in church and be very vocal in offering an opinion about whether there is a soul and afterlife for a clone. During adolescence, friendships and dating might be very limited because of fear by the prospective partner, peer pressure, and parental prohibition. How many community parents would fear a pregnancy and wonder whether the offspring would be unusual, unhealthy, or less-than-human?

Legal Issues. A legal specialty would probably evolve to address many conflicts. Deciding who the “real parent” is can become very complicated, should there be custody battles. What if the divorcing couple both want the child, but the man donated the DNA/genetic material while the woman donated the uterus and denucleated egg? What if neither of the married (or unmarried) couple want custody, or a third party DNA or egg donor now wants full or joint custody? What if a third party wants to remain anonymous, but the clone sues to uncover the identity?

Nonparenting issues would also arise over time. Discrimination arguments related to education, housing, and employment might affect current interpretations of Civil Rights or American Disabilities Acts. Inheritance might become an issue if there was no will and the clone was a result of DNA donated from a sibling. Would the sibling be viewed as an older identical twin or the clone’s parent? Would a female clone who wants children have to get permission from her mother, since genetically, they would also be children of her mother? If there were physical or mental disabilities, would insurance companies argue that there were “preexisting conditions” and try to deny coverage to the parents, as well as the clone?

Developmental Disabilities and Cloning

Clones born with, or who acquired cognitive and/or mental health disabilities during the developmental period, would probably be viewed as cloning errors, unless there was an obvious predisposition in the family. Not only would conflicts such as the above be relevant, but some unique ones as well. Depending on the severity of the disability, residential placement and financial issues might become additional family and social concerns. Though not likely to be very numerous at first, if cloning continued, errors would add up over time. Given the great expense involved in supporting the disabled, the impact on the developmental disabilities field could be very significant, especially if compounded by stem cell errors associated with therapeutic cloning,

Social Issues

The more different from what parents had “hoped and dreamed” of , and the more disabled and difficult to care for, the more intense the disappointment would tend to be. This could lead to voiced or unvoiced blame of the person who donated the DNA, or even the egg cell, since an egg cell has more than just DNA that could be faulty. This could put an insurmountable strain on the couple’s relationship. Siblings who would have had difficulty accepting a healthy clone as a “real sibling or real human” would have even more difficulty if there was a severe disability. This would be intensified if the clone was unattractive, displayed challenging behavior, had mental health problems, and was a source of conflict among the parents. The strain within the family would increase, and pressure for alternate residential placement would mount.

Although some in the community might become more sympathetic and supportive, others might become more antagonistic and discriminating; especially if cloning errors accumulated to the point of finances/taxes being affected. There would also likely be more fear, particularly of those with only mild intellectual deficits but pronounced behavioral or mental health difficulty. Would this lead to closer scrutiny by the police and more erroneous arrests, detention, and prosecution; especially if a very violent or sexual crime had been committed? If incarcerated, would there be even “harder” time than has been reported for other prisoners with developmental disabilities? How would guards or inmates react?

During adolescence or even adulthood, there would probably be strong pressure to restrict dating and marriage, especially by eugenicists, given that the disability would be viewed as a “genetic certainty” by most people. For many clones, life might become very lonely and empty. If they were an only child or had no close ties with siblings, who could they reach out to for support and protection as they aged and their parents died?

Legal Issues

Not only would parents be shocked by having a clone with a disability, but given the great monetary expense, some would feel “cheated” and sue for damages. Extreme disappointment over having such a child would strain many relationships beyond repair, and custody issues would arise. After a while, contract writing regarding cloning would become critical in order to (1) protect those who clone, (2) deal with complex parenting and custody issues, (3) resolve inheritance issues, and (4) provide for the clone’s welfare, should the parents die. As noted above, legal struggles might occur with regard to discrimination, as well as the criminal justice system. A variety of lesser lawsuits might be filed if there was intense conflict between the clone’s family and antagonistic neighbors. It is even possible that a resentful clone with a disability would sue the parents if a similar disability was discovered in the family background.

Some Potential Negative Impacts on the Developmental Disabilities Field

If cognitive disabilities due to cloning and stem cell errors accumulated over the years, significant financial and service delivery decisions might have to be made, especially if the disabled required close supervision and care. Coexisting mental health and behavioral challenges would add more strain. An infusion of state and federal dollars would be needed but, at least during those occasional periods when the economy was weak, would likely fall short of requests. Historically, insecure economic periods with rising unemployment have tended to be difficult, and even tragic at times, for people with developmental disabilities and mental health problems (Smith, 2001).

If budgets failed to keep pace with the financial needs, would this result in a slowing or even reversal of the gains made these past few decades in areas such as education, employment, and community placement? With mounting expenses, would school systems pressure legislators to reduce financial obligations for Special Education and to allow easier expulsion of the behaviorally and medically challenged? With periods of rising unemployment, would there be less attention given to the disabled who want to work? Would institutions be pressured to admit those who require closer medical and behavioral supervision than can be afforded by many community settings? What would happen to funding for Special Olympics and other supportive agencies?

Since every step backwards might become a blow against Person-Centered efforts, independence, inclusion, and security, would there be efforts within the field to stop clones from being included in the developmental disability category; especially if there was significant financial impact, as well as discomfort and rejection by a growing number of service providers in various residential, educational, day activity, and vocational settings? After having gained a more acceptable image and influence the past few decades, being associated with clones would be very threatening to many within the developmental disabilities field. The great attention that would be given to cloning successes and errors by the media, including tabloids and television programs that thrive on sensationalism, would certainly add to anxieties.

Final Remarks

As long as efforts to clone humans continue, it is imperative that social and legal issues be weighed as heavily as moral, ethical, and religious ones. People considering cloning for reproductive purposes should not only be counseled on the critical issues, but also on other reproductive options currently available and on the horizon. For example, genetic engineering research with gene splicing, gene replacement, and gene therapy offer much hope to parents fearful that the fetus might inherit a genetic disease through sexual reproduction. Recent tissue engineering research offers hope for organ transplants that might be needed.

Although cloning for reproductive purposes might result in more loss than gain for the developmental disabilities field, stem cell research for therapeutic purposes offers real hope for both prenatal and postnatal disabilities. While such research is in its infancy and moral barriers will slow research, its therapeutic potential is very exciting. If near future research shows real promise, and if members are very supportive, various professional organizations might consider taking a very public stand on the great impact further stem cell research might have on our field.

References

Silver, L. M. (1998). Remaking Eden. New York: Avon Books, Inc.

McGee, G. (Ed.). (2000). The Human Cloning Debate. Berkeley: Berkeley Hills Books.

Smith, S. A. (2001). The “Golden Age”: Embrace the present but be(a)ware of the past. The NADD Bulletin, 4, 33-36.

For further information:

Dr. Stu Smith, Chief Psychologist
PeeDee Developmental Center
408 North Main St.
Darlington, SC 29532