Ethical Issues and Public Opinion - Noted Authors Weigh In On The Risksand Benefits Of Genetic Engineering

In Our Posthuman Future: Consequences of the Biotechnology Revolution (New York: Farrar, Straus & Giroux, 2002), Francis Fukuyama, a professor of international political economy at Johns Hopkins University who serves on the President's Council on Bioethics, TABLE 10.5
Public opinion on whether genetic technology is the next step in human evolution, by demographic characteristics, 2004
SOURCE: "Table 5.2. Reproductive Genetic Technology is Potentially theNext Step in Human Evolution," in "Chapter 5: Human Control Over Reproduction," Reproductive Genetic Testing: What America Thinks Genetics and Public Policy Center of the Phoebe R. Berman Bioethics Institute at the John Hopkins Universtiy, December 2004, http://www.dnapolicy.org/policy/rgtOptions.jhtml (accessed March 14, 2005)

Demographic characteristic		Percent of those who agree or strongly agree
Total		53.6
Sex	Men	55.6
	Women	51.7
Age	Age: 18–29	52.2
	Age: 30–49	52.2
	Age: 50+	55.9
Race/ethnicity White	52.4
	Black	60.0
	Hispanic	57.0
Religion	Protestanta	56.7
	Fund/Evangb	41.0
	Roman Catholic	53.8
	Other Christianc	54.4
	Other (non Christian)	56.7
	No religion	60.9
Income	Under 25k	57.1
	25k–49k	52.5
	50k–74.9k	50.7
	75+k	52.0
Education	No college	56.5
	Some college	51.7
	College	49.4
	Post grad	51.6
Political affiliation	Republicans	45.6
	Other affiliation	52.2
	Democrats	58.4
aProtestant includes respondents who self-identified as Protestant, excluding those who additionally self-identified as Fundamentalist or Evangelical.
bFundamentalist/Evangelical includes all Protestant or Other Christian respondents who additionally self-identified as Fundamentalist or Evangelical.
cOther Christian includes all who self-identified as Other Christian, excluding those that additionally self-identified as Fundamentalist or Evangelical.

cautioned about the use and misuse of science and biotechnology. He observed that genetic engineering has gained popular acceptance as it is used to prevent or correct selected medical conditions, but he shared the widely held concerns about the unforeseeable results of gene manipulation and the potential for altering the complexion of society through the use of "enhancement technology" to customize the attributes of offspring. Fukuyama asserted his deeply held fear that those able to afford the genetic interventions to produce offspring who are smarter, stronger, more athletic, talented, and better looking will further widen the chasm between the economic classes. And he wrote that the ways in which society chooses to employ, regulate, and restrict genetic engineering may challenge traditional concepts of human equality, changing existing understanding of human personality, identity, and the capacity for moral choice. Furthermore, he contended that genetic engineering technologies may afford societies new techniques for controlling the behavior of their citizens and FIGURE 10.4
Public opinion on concern about social implications of genetic testing, 2004
SOURCE: "Figure 6.1. Level of Concern about Social Implications," in "Chapter 6: Implications for Individuals, Families and Society," Reproductive Genetic Testing: What America Thinks, Genetics and Public Policy Center of the Phoebe R. Berman Bioethics Institute at the John Hopkins University, December 2004, http://www.dnapolicy.org/policy/rgtOptions.jhtml (accessed March 14, 2005) FIGURE 10.5
Public opinion on whether increased control of human
reproduction will negatively affect the treatment of children,
2004
SOURCE: "Figure 6.2. The Ability to Control Human Reproduction Will Lead to Treating Children Like Products," in "Chapter 6: Implications for Individuals, Families and Society," Reproductive Genetic Testing: What America Thinks, Genetics and Public Policy Center of the Phoebe R. Berman Bioethics Institute at the John Hopkins University, December 2004, http://www.dnapolicy.org/policy/rgtOptions.jhtml (accessed March 14, 2005) could potentially overturn existing social hierarchies and affect the rate of intellectual, material, and political progress. Fukuyama predicted that genetic engineering and other applications of biotechnology have the potential to sharply alter the nature of global politics.

Despite his fears and cautions about the relatively recent ability to intentionally modify the human organism as opposed to waiting for evolution, Fukuyama does not feel it necessary or advisable to prohibit any actions that alter genetic codes. He would, however, start by banning reproductive cloning outright, to establish a precedent for political control over biotechnology. If society does not institute effective regulation, Fukuyama warned that

we may be about to enter into a posthuman future in which technology will give us the capacity gradually to alter that [human] essence over time. …We do not have to regard ourselves as slaves to inevitable technological progress when that progress does not serve human ends. True freedom means the freedom of political communities to protect the values they hold most dear, and it is that freedom that we need to exercise with regard to the biotechnology revolution today.

Bill McKibben, author of the renowned book The End of Nature (New York: Anchor Books, 1990), which describes the consequences of damage done to the environment by overpopulation and global warming, also published Enough: Staying Human in an Engineered Age (New York: Times Books, 2003), in FIGURE 10.6
Public opinion on the appropriate role of government in making decisions about reproductive genetic testing, 2004
SOURCE: "Figure 8.4. Appropriate Role of Government?" in "Chapter 8: Oversight of Reproductive Technology" in Reproductive Genetic Testing: What America Thinks, Genetics and Public Policy Center of the Phoebe R. Berman Bioethics Institute at the John Hopkins University, December 2004, http://www.dnapolicy.org/policy/rgtOptions.jhtml (accessed March 14, 2005) which he warned that genetic engineering may not fulfill its promises. McKibben worried that society has been oversold on the potential benefits of genetic manipulation and that promises that it will make future generations healthier, smarter, happier, taller, thinner, better-looking, stronger, and saner may instead rob future generations of free will and freedom of choice. Like Fukuyama, McKibben was concerned that enabling the wealthy to custom-equip their offspring with good looks, high intelligence quotients, and athletic prowess will reinforce and deepen existing social class distinctions.

Although advocates claim it will prevent debilitating and fatal diseases and forestall death, McKibben believed that even the genetically enhanced will suffer. He feared that they will be beset by self-doubts, wondering if their achievements are their own or simply attributable to the geneticist. And he wondered whether children whose parents have chosen to enhance them in the lab before birth will be able to make choices about their own lives, or will they just be making choices according to their prescripted genetic plans? McKibben contended that "the person left without any choice at all is the one you've engineered."

McKibben also argued against using "germline engineering technologies" to prevent diseases or "germline gene therapy" to treat diseases. Such therapies involve more than simply altering the affected individuals' genes; they embed the genetic changes in their reproductive cells (sperm and eggs) so that the genetic alteration is heritable by all future generations. Furthermore, McKibben noted that society is as yet unable to distinguish between preventing disease and simply enhancing natural characteristics. Citing efforts to prevent dwarfism (short stature) and genetic enhancements to increase the height of a child who is naturally of short stature, he observed that "there's no obvious line between repair and improvement." He also expressed some skepticism about the feasibility of effectively regulating the distinction between repair and improvement in medical offices and clinics throughout the United States. McKibben asserted that the pace of change has accelerated such that decisions about how to use nanotechnology and other genetic engineering techniques must be made before their use is widely available and accepted. He feared that society may accept the view that humans are an "endlessly improvable species" and exhorted readers to conclude that human beings as currently constituted are good enough.

In Genetics, Ethics: Playing God? Human Genetic Engineering and the Rationalization of Public Bioethical Debate (Chicago: University of Chicago Press, 2002), sociologist John Evans traced the public debate about human genetic engineering from the late 1950s through the mid-1990s. Evans felt that the debate had eroded over time from a substantive, rational discussion about the outcomes of human genetic engineering to a superficial dispute about the means to achieve a select few results. He contended that by 1995 bioethicists no longer engaged in discussions of the larger, weightier, philosophical, and theological arguments about human genetic engineering. Instead, bioethics focused on resolving practical questions such as how medical decision making should occur and which parties should participate in the decision-making process. The widespread availability of genetic testing and counseling reinforced the argument that parents should be the ultimate arbiters of what is best for their offspring. Evans believed that early acceptance of these genetic engineering applications paved the way for societal acceptance of the inevitability of additional and potentially more controversial forms of human genetic engineering.

Evans concluded by calling for renewed debate about these significant ethical issues, recommending the establishment of separate groups to discuss the ends and means of human genetic engineering and cautioning that advisory commissions, in order to truly function representatively, should include lay persons. He also exhorted the American public to become involved in human genetic engineering debates by voting and selecting legislators who respond to their constituencies when preparing and enacting controversial resolutions and policies about the use of biotechnology.

The renowned bioethicist Arthur Caplan thinks that ethical implications of new knowledge in genetics are not at the forefront of the minds of professionals and health care consumers because of the uncertainty about how to use the new knowledge. In "If Gene Therapy Is the Cure, What Is the Disease?" (American Journal of Bioethics, November 8, 2002), Caplan, a strong supporter of the HGP, asserted that the greatest challenge to securing funding and support for genomic research is public fear of germline engineering—that is, manipulating the human genome in order to improve the human species—and he acknowledged that this fear is based on the historical reality of horrible eugenics (hereditary improvement of a race by genetic control) practices in Germany and other countries.

Caplan cited examples of genetic engineering in the United States such as the Repository for Germinal Choice in California, also known as the "Nobel Prize sperm bank," which solicits and stores sperm from men selected for their scientific, athletic, or entrepreneurial acumen. The banked sperm is available for use by women of high intelligence for the express purpose of creating genetically superior children. Caplan observed that there have been relatively few critics of this practice, whereas the mere suggestion of the possibility of directly modifying the genetic blueprint of gametes (sperm and eggs) has generated fiery debate in professional and lay communities. He contended that the history of eugenically driven social policy is reason enough to question and even protest the actions of the Nobel Prize sperm bank but that it does not argue against allowing voluntary, therapeutic efforts using germline manipulations to prevent certain serious or fatal disorders from besetting future generations.

Caplan concluded that the decision to forgo germline engineering does not make ethical sense. He lamented that

some genetic diseases are so miserable and awful that at least some genetic interventions with the germline seem justifiable. It is at best cruel to argue that some people must bear the burden of genetic disease in order to allow benefits to accrue to the group or species. At best, genetic diversity is an argument for creating a gamete bank to preserve diversity. It is hard to see why an unborn child has any obligation to preserve the genetic diversity of the species at the price of grave harm or certain death.

Caplan feared that choosing to refrain from efforts to modify the germline will result in lives sacrificed—that is, important benefits will be delayed or lost for people with disorders that might be effectively treated with germline engineering. Caplan recommended responding to justifiable concerns about the dangers and potential for abuse of new knowledge generated by the genome with frank, objective assessments of the appropriate goals of this application of biotechnology.