Genetic selection and parental rights in dwarf families

Morality / Bioethics

The issue in this scenario is that Carl and Olivia Padrone are dwarfs and they would like to be certain that if they have a child they want to be sure it is a dwarf. That presents something of an issue on a social moral level because dwarfs are known to have defective genes. So, is it morally above board to facilitate the wishes of parents to have their child share the same defective genes as they are, so they can be like their parents? Is it morally valid to tell dwarf parents that they can't have a child their own size? Dallas Stratford is reluctant to arrange the genetic test because his view is that "…people want to avoid having a child with the mutation that produces dwarfism." But if the wishes of the potential parents are met, what difference would it make to Stratford? Moreover, what are the salient arguments on either side of this issue?

The Issues with Dwarfism -- Dwarf Parents' Wanting Dwarf Children

In the book Children's Right to Freedom, Care, and Enlightenment, author Bertram Bandman discusses protectionists and liberationists. Protectionists, Bandman writes, are those that favor adult's rights over children's interests. And Liberationists favor the same rights for children "…as adults have, such as those of self-determination," e.g., the right to vote, or do what they want with their money, etc. (Bandman, 1999, p. 5). Protectionists know best what to do in order to protect their children's best interests, the author asserts on page 5. The scenario goes like this:

"Suppose a dwarf woman gives birth to a child with the same congenital defect. A new treatment promises to make the child a normal size, but she and her husband refuse it; they very much want a dwarf child" (Bandman, p. 5). This couple has already had a child that was normal human size. From the time the child was an infant, Bandman explains, that child "…was too large for them to care for" and as time went on and the child grew to normal size, the couple needed "increasing help from larger adults, with the result that the child eventually became estranged from them and eager to leave the circus world in which they lived" (Bandman, p. 5). So despite the teasing and bullying and harassment a dwarf child will be subjected to, the parents want a dwarf child. Do they have the moral right to decide how their child will look?

In this case protectionist William Ruddick believes that the parents do indeed have the right to decide how to bring up the children, albeit parents do need to provide for "the necessaries of life" (Bandman, p. 5).

The Case Against Deliberately Implanting a Defective Gene

Dr. Yury Verlinsky of the Reproductive Genetics Institute in Chicago, refuses to grant requests from dwarf parents to implant a defective gene just so dwarf parents can have a dwarf baby. "If we make a diagnostic tool, the purpose is to avoid disease," he said in the Sanghavi article. Dr. Robert J. Stillman of the Shady Grove Fertility Center in Rockville, Md. Also denies requests from parents that want a deaf child or a dwarf child. "In general, one of the prime dictates of parenting is to make a better world for our children. Dwarfism and deafness are not the norm" (Sanghavi, p. 2).

The Case For Implanting a Defective Gene

In the first place, author Betty Adelson insists that in the past 30 years, dwarfs "have created a new world" in which they are approaching normalcy "more closely than at any time." And new medical knowledge have allowed them "to be much healthier over the course of their lifetimes" (Adelson, 2005, p. xx). In other words, life is getting better for little people. Moreover, a 22-year study by the University of Southern California indicates that the growth-stunting mutation that causes dwarfism may actually block cancer cells from growing, eliminating one risk that humans always worry about (States News Service, 2011).

Conclusion

In the opinion of this writer, if the parents are dwarfs, and they wish to use PGD services to be certain their child will also be a dwarf, the ethical choice is theirs to make. The morality of their decision is really between themselves, their doctors, and their religious leadership, if that is important to them. It is not the government's decision to make, so long as PGD services are legal and their work is transparent. Regarding moral principles, David Resnik's "Autonomy" principle is very appropriate: "Allow rational individuals to make free and informed choices" (Resnik, 1998).