Ethics in a World Ruled by Law and the Market: Adoption, Assisted Reproduction and Parenthood
George Annas, J.D., M.P.H., Health Law Department, Boston University School of Public Health, Boston, MA
There is a general tendency in U.S. society to focus on the law rather than ethics. For example, it is common to ask the question, "can I get sued?" rather than, "what is the right thing to do?" A society with no ethics other than law, however, is paralyzing.
While the law gives us guidelines for "appropriate human conduct" and ethics focuses on higher aspirations of doing the "right" thing, the ever-growing marketplace in this country equates money with happiness and allows people to buy almost anything. But are there some things , particularly in relation to children and parenthood , that money should not be able to buy?
The Internet , an example of the many new opportunities present in today's marketplace , has the potential to bring the world together. On the other hand, it can lead to new forms of commodification. The recent situation involving a web site offering the eggs of beautiful models is a good example. Though a scam, many people took the web site seriously - a reaction that shows that we live in a society in which we understand that everything can be for sale to the highest bidder. The response also reflects our view of infertility in the U.S. as a terrible thing, especially when it means that a man cannot have a genetic child. The message is that a rich man should be able to buy what he wants, including a daughter who is good-looking.
The Boy Scouts' concept of what constitutes ethical behavior is a good model. The first six on the list, trustworthy, loyal, kind, helpful, courteous, and friendly, are what we want from doctors and adoption agencies. The next six, clean, reverent, brave, obedient, cheerful, and thrifty, are what they want from us. But this is obviously an insufficient ethical code for the infertility industry.
What can be learned by looking at both the infertility industry and adoption? The language of adoption, for example, is being used within the context of the reproductive technologies. Frozen embryos left behind when a couple dies are called "orphans" and the question is "who can adopt them?" This raises a number of issues regarding parenthood and genetics.
A major issue in the reproductive technologies now is, who is the child's mother? There are at least three potential mothers: the genetic mother, the gestational mother, and the rearing mother. How do we decide who the rearing parent is? Reproductive technologies began with artificial insemination by sperm donors. The primary concern at the time was the protection of the sperm donor, based on the assumption that the man would contribute his genes and then "give up fatherhood." The Mary Beth Whitehead case [in which she was the egg donor and gestational mother who agreed to place the child with the sperm donor-father but then changed her mind upon giving birth] raised questions regarding whether contract law as applied to a sperm donor should also be applied to a surrogate mother, whose participation in the formation of a child includes pregnancy and childbirth. This was the first case involving the intersection of reproductive technologies and adoption. The New Jersey Supreme Court ultimately held that adoption law should control in this situation, named Mary Beth Whitehead the mother of the child, and concluded that the best interests of the child should determine custody.
Since then, have things gotten better or worse? In another case, Ms. Johnson, the gestational [but not genetic] mother of an infant conceived from the Calverts' egg and sperm, decided that she wanted to raise the baby herself after giving birth. Who should be the legal mother in this case: the gestational mother or the genetic mother? The court decided that sperm donation principles applied and declared that the genetic mother was the real and "natural" mother. But is this the right decision? Should a contract be looked at to decide this question? Should we turn to genetic testing? Or should the woman who gives birth always be declared the mother?
The situation is further complicated by cloning, the process of creating a genetic duplicate of an existing person by nuclear somatic cell transfer. Some hold the view that a clone would have only one genetic parent, the person who was cloned. Others argue that the parents of the clone would be the parents of the cloned person. Thus, if an adult decided to clone him/herself and raise the child, that adult would, in effect, be the rearing parent and the genetic sibling of that child. A complicated situation, and one requiring new rules if cloning of people is ultimately allowed (which Mr. Annas personally opposes because of the harm to the child).
Genetic Knowledge and Genetic Ties
Is a person entitled to a unique genetic identity? Is our future in our genes? To what extent should there be limits on the decisions that are made about reproduction? For example, technology (ICSI) has increased to the point that sterile men can reproduce, but in some cases, 100% of their children will also be sterile. Should an infertility specialist help to "make" infertile children when their medical calling is to treat the disease of infertility? Is the genetic tie the most important tie in parenthood?
Should parents be able to select the gender of their child and should science cater to parental preferences? It is clear that if clinics sell embryos, the price will vary depending on the characteristics of the genetic parents of the embryo, for example, the embryos of the most beautiful women command the highest prices. With the development of techniques to produce "smarter" mice, there is interest in applying that knowledge to produce smarter children. Where, however, is the line between promoting the "health" of children and engineering a better model of a child or a "perfect baby"?
The use of DNA, which carries much more than identification capabilities, raises another set of issues. It is a "future health diary in code", involving very personal, private information, which will be de-coded as soon as the Human Genome Project is complete. As a consequence, proposals to maintain DNA data banks raise many ethical issues, including the availability of personal information that could be released without consent. Especially troublesome are proposals to collect and store DNA samples on all newborns, or to provide potential adoptive parents with DNA samples of children available for adoption.
1. We need to think globally about reproductive technology and adoption. There is an international character to both, and both involve issues of poverty, disease, equality and equity. Consider the situation of growing numbers of orphans created by AIDS in Africa. We have the science to stop the transmission of AIDS from mother to child, but it is considered "too expensive." We do not have the answer as to what to do about the orphaned children. We should rely on human rights language as the basis for action, drawing on the UN Declaration of Human Rights and the UN Convention on the Rights of the Child.
2. We need to take the new genetics seriously. It is not all benign nor is it only being utilized to better the quality of human lives. We do not know where the line is between "health" and a "new, improved" person. We should learn from the environmental movement and use the precautionary principle and a moratorium until there is an assurance that the benefits will outweigh the risk.
3. We need to take the market more seriously. The sale of sperm, eggs and embryos [the only human body parts in addition to blood that can be bought or sold] should be outlawed. We need to recognize that sperm donation and egg donation are not the same. Egg donors undergo major medical procedures and are the only patients who essentially are without their own doctor [the doctor doing the procedure is the doctor for the couple wishing to reproduce]. The argument is made that $5,000 is being paid to the woman for inconvenience but in reality it is an egg that is being bought. We also need to take pregnancy more seriously and treat pregnant women well by making services readily available. We need to establish rules for I.V.F. and hormone stimulation, having eight babies is a tragedy, not a miracle, and it can be avoided. The number of embryos transferred, for example, should be limited to two.
4. We need to take the best interests of the child more seriously. A child is totally dependent on adults. The gestational mother is the appropriate person to be declared the legal mother because she will always be there at birth to advocate on behalf of the child. A child's interest, in general, should supercede all other parties' interests.
5. We need to recognize that these issues go to the heart of personal identity, relationships and family. They deal with the questions of whether who we are is based on our genes, our relationships, or a mixture of both. Genetics encourages us to believe that only genes matter and this is a very dangerous belief. Genetic technology will be available only to the rich and will inevitably lead to a split between the rich with "good" genes [a superior class] and the rest of us. Equality and individuality must remain the focus of a child-centered ethic.
As Aldous Huxley noted, "That we are being propelled in the direction of a brave new world is obvious, but no less obvious is the fact that we can, if we so desire, refuse to cooperate with the blind forces that are propelling us", in this case, the blind forces of commercialism and geneticism.
Discussion: Points Raised by Conference Participants
Adoption is seen as second best in the world of infertility treatment, a "consolation prize." The infertility industry does not address adoption as an option and it is considered by individuals only after they are 10 years older and considerably poorer. We need to figure out how adoption may be seen as a primary option for children and parents.
Medicine starts with the assumption that people must have a genetic child. This is ironic considering that as each technique fails, the next technique is less tied to genes. The process of going from sperm donation to egg donation to the donation of both demonstrates the reality that the medical industry is not as concerned with maintaining the genetic tie as it is with making money.
While genetics are not unimportant, the identity of "mother" could be tied to the questions: Who put in the most biologically in terms of gestation and childbirth? Who has a relationship with the child, both on a physical and psychological level? Or perhaps the focus should be placed on acknowledging that there are two mothers.
Secrecy in reproductive technology persists. Many families do not tell, and many people find out in messy divorce situations when the truth comes out. Secrecy is being questioned more, but it still characterizes the practice. There is no data on the extent to which information is shared or the extent to which individuals search for their genetic parents.
"Matching" is not just physical. In adoption, for example, there may be physical dissimilarities but a "match" in background, disposition and interests. On the other hand, there may be a physical match, but tragic discrepancies in backgrounds.