Ethical Issues and Public Opinion - Surveys Reveal Support For, Andconcern About, Genetic Research Andengineering

Genetic research and engineering technologies promise to address some of the most pressing problems of the twenty-first century, such as cleaning the environment, feeding the world's hungry, and preventing serious diseases. But like all new technologies, they pose risks as well as benefits. In general, Americans support advances in genetic research and technology, and they are optimistic that the outcomes will ultimately be used to reduce sickness and suffering, as opposed to generating legal and ethical controversies. In a June 2000 Fox News/Opinion Dynamics poll, more than half (56%) of the respondents thought the prospects and application of knowledge of the human genome would have a positive effect.

Most Americans are confident that genetic engineering holds great promise, and they support research and development of biotechnology, with one significant exception: cloning humans. Americans of all ethnicities, educational attainment, and political persuasions remain staunchly opposed to human cloning. Although there is some support for therapeutic, as opposed to reproductive, cloning initiatives, many Americans do not even endorse cloning domestic animals. For example, in response to the cloning of a pet cat by the California-based Genetic Savings & Clone, Inc., in February 2005, California assemblyman Lloyd Levine introduced a bill to ban the sale of cloned pets.

Arguments for and against other genetic engineering applications, such as production of genetically modified food crops and the feasibility of stem cell research, arise from widely different philosophical and ethical perspectives on the new technology. Some of the fears about genetic diagnosis presume that the use of such technologies will be alien, impersonal, and technologically difficult. Scientists and advocates of applying genetic engineering to improve human life foresee a future in which parenting is guided by genetic testing, and new reproductive technologies are routine aspects of medical care in our lives. Bioethicists and others concerned about the implications of the routine use of this biotechnology contend that it is possible and advantageous to fund, discuss, and regulate genetics in the same way we currently consider environmental medicine, nutrition, and public health.

Americans Are Aware of Genetic Testing

In December 2004 the Genetics and Public Policy Center published Reproductive Genetics Testing: What America Thinks, an analysis of survey data characterizing public awareness and knowledge, perceptions, and views about various aspects of genetic testing. The Genetics and Public Policy Center is a part of the Phoebe R. Berman Bioethics Institute at Johns Hopkins University and is funded by the Pew Charitable Trusts. The Center's mission is to create the environment and tools needed by decision makers in both the private and public sectors to carefully consider and respond to the challenges and opportunities that arise from scientific advances in genetics. Based on the largest public opinion survey ever conducted of American attitudes toward genetic testing, the research included twenty-one focus groups, sixty-two in-depth interviews, two surveys with a combined sample size of more than 6,000 people, and both in-person and online town-hall meetings.

The researchers found relatively high levels of awareness about genetic technologies, with a majority of the American public reporting familiarity with cloning (97%), in vitro fertilization (90%), genetic testing (89%), and prenatal testing (83%). Surprisingly, nearly half of the survey respondents were acquainted with genetic modification, and 40% said they had heard of the relatively new technology of preimplantation diagnosis. (PGD is genetic testing performed on embryos produced via in vitro fertilization. It has been used by people at risk of transmitting a single gene disorder to their offspring as well as to detect chromosomal abnormalities in embryos of older women undergoing fertility treatment.) (See Figure 10.1.)

Knowledge and awareness of genetic testing vary by gender, educational attainment, and income, with women and those with higher education and income reporting the highest levels of knowledge about reproductive genetic technologies. (See Table 10.2.) Similarly, higher education is associated with accurate information about, and understanding of, the capabilities of genetic testing. More than two-thirds of respondents with post-graduate education were aware that genetic testing could be used to determine whether an individual is at increased risk of developing cancer compared to just half of those without a college education. Men were more likely than women (59% versus 55%), and whites more likely than African-Americans (58% versus 51%) to know the capabilities of genetic testing. (See Table 10.3.)

FIGURE 10.1
Public awareness of genetic technologies, 2004
SOURCE: "Figure 2.1. Awareness of Genetic Technologies," in "Chapter 2: Public Awareness," 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)

Approval of Genetic Testing Depends on How It Is Used

Americans' support for the use of reproductive genetic testing depends on how it is being used. Two-thirds approve of the use of genetic testing to screen for fatal childhood diseases and for tissue matching, and the majority supports testing to identify people at risk of developing diseases such as cancer. There is much less support for genetic testing for purposes of trait selection such as intelligence or strength. However, nearly 40% of Americans believe that using prenatal genetic testing to select for gender is an appropriate use of the technology. (See Figure 10.2.) Support for different types of genetic testing varies slightly by gender, race, and ethnicity, but the greatest difference in support is by religion. Fundamentalist and Evangelical Christians were the least supportive of using reproductive genetic technologies for any purpose, and Protestant respondents reported the highest levels of approval (30%) for genetic testing for traits than any other religious group. As educational attainment of respondents increased, so did support for prenatal genetic testing and testing to identify fatal childhood diseases. (See Table 10.4.)

TABLE 10.2
Public awareness of selected genetic technologies, by demographic characteristics, 2004
PROPORTION OF RESPONDENTS WHO HAD HEARD ABOUT THE FOLLOWING TECHNOLOGIES PRIOR TO THE INTERVIEW:
SOURCE: "Table 2.1. Proportion of Respondents Who Stated They Had Heard about the Following Technologies Prior to the Interview," 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)

Demographic characteristics		In vitro fertilization	Genetic testing	Prenatal genetic testing	Preimplantation genetic diagnosis	Genetic modification	Cloning
Total		90.4	88.5	83.4	40.2	48.1	96.6
Sex	Men	88.4	86.0	78.0	36.3	51.6	96.3
	Women	92.3	90.9	88.3	43.9	44.9	96.9
Age	18–29	89.4	89.6	81.4	41.5	56.4	96.8
	30–49	90.1	88.7	84.0	39.4	48.3	96.6
	50+	91.2	87.8	83.8	40.4	43.1	96.6
Race/ethnicity	White	92.8	91.0	85.1	41.4	50.4	97.7
	Black	83.7	85.0	76.9	34.7	34.8	96.1
	Hispanic	86.2	81.6	81.8	38.7	46.0	93.5
Religion	Protestanta	91.3	90.3	83.3	41.0	42.6	98.3
	Fund/Evangb	92.0	90.1	84.9	39.4	47.8	98.0
	Catholic	92.7	88.9	84.8	39.5	50.8	96.8
	Other Christianc	88.6	87.9	86.0	42.7	45.1	96.0
	Other (non Christian)	88.3	82.3	76.5	30.7	55.6	93.3
	No religion	87.0	87.0	81.2	43.0	56.1	93.9
Income	Under 25k	87.0	83.2	80.1	40.5	42.7	93.9
	25k–49k	90.0	89.4	82.3	38.4	46.3	97.4
	50k–74.9k	92.7	92.0	84.4	39.8	52.4	98.7
	75+k	95.8	94.2	91.4	44.2	58.9	98.4
Education	No college	85.6	82.5	77.4	34.2	35.5	94.6
	Some college	92.0	92.0	84.8	43.6	53.2	98.0
	College	97.7	96.5	93.8	45.0	65.3	99.2
	Post grad	97.8	96.2	92.2	53.1	68.8	98.4
Political affiliation	Republicans	92.5	91.2	86.8	38.9	48.9	98.4
	Other	83.9	80.6	75.9	36.1	39.3	92.7
	Democrats	89.8	86.6	81.4	38.2	45.3	96.6
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.

TABLE 10.3
Public awareness of the capabilities of genetic testing, 2004
PERCENTAGE OF CORRECT RESPONSES TO GENETIC TESTING QUESTIONS:
SOURCE: "Table 2.2. Percentage of Correct Responses to Genetic TestingQuestions," 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)

Demographic characteristics		It is possible to test for certain kinds of cancer	It is not possible to test for intelligence or strength
Total		56.9	22.1
Sex	Men	59.1	24.4
	Women	54.9	20.0
Age	18–29	56.5	28.3
	30–49	57.8	26.7
	50+	56.2	13.7
Race/ethnicity	White	57.9	22.3
	Black	51.4	16.0
	Hispanic	55.4	23.1
Religion	Protestanta	57.2	18.7
	Fund/Evangb	55.2	19.0
	Catholic	58.1	22.8
	Other Christianc	53.9	20.5
	Other (non Christian)	58.9	33.0
	No religion	60.6	29.7
Income	Under 25k	52.5	18.1
	25k–49k	57.2	22.3
	50k–74.9k	58.5	23.5
	75+k	63.7	29.0
Education	No college	49.5	16.9
	Some college	62.2	23.1
	College	63.3	28.5
	Post grad	68.4	35.7
Political affiliation	Republicans	57.4	23.3
	Other	47.3	19.7
	Democrats	56.0	19.5
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.
c Other Christian includes all who self-identified as Other Christian, excluding those that additionally self-identified as Fundamentalist or Evangelical.

Americans overall are worried about how genetic technologies will be used. Three-quarters of those surveyed said they agreed with the statement, "Technology will inevitably lead to genetic enhancement and designer babies." (See Figure 10.3.) By contrast, other survey respondents, mostly male, contended that genetic technologies should be used because intervention in reproduction will lead to tremendous improvements in human health. Table 10.5 shows that 56% of male respondents strongly agreed that reproductive genetic technology is potentially the next step in human evolution. Older adults, African-Americans, Democrats, and those without a religious affiliation were most likely to agree with this statement.

Eighty-one percent of respondents indicated considerable concern that the use of genetic technologies could result in discrimination against and stigmatization of people with disabilities. (See Figure 10.4.) Women, people with less education, religious fundamentalists, and Evangelical Christians were most concerned about discrimination. Other concerns about the social consequences of genetic technologies include the fear that parents will be pressured to use technology or that there will be societal expectations that everyone should be flawless—free of imperfections, diseases, or disabilities. Seventy percent of those surveyed agreed that the ability to control human reproduction will lead to treating children like products. (See Figure 10.5.)

Americans were also concerned about legislation and oversight of reproductive genetic testing, balancing the wisdom of legislation and government oversight with the autonomy of individual and family decision making. The poll found widespread concern about the potential for unregulated technology to "get out of control" (84%), but more than two-thirds of survey participants (70%) were also skeptical about government regulators invading private reproductive decisions. About the same proportion (67%) said people should make their own decisions because the consequences of their choices were so intensely personal. More than three-quarters of respondents said the appropriate role of government was to oversee or track the effects of using genetic testing (76%); nearly three-quarters felt government should study the health effects of genetic testing; and 58% said the government should ensure equal access to this technology across demographic groups. (See Figure 10.6.)