Ethical Issues and Public Opinion - Establishing Priorities Forgenetics Research

In their essay "Some Gene Research Just Isn't Worth the Money," in the January 18, 2005, issue of the New York Times, Keith Humphreys and Sally Satel described the efforts of two geneticists, Dr. Kathleen Merikangas of the National Institute of Mental Health (NIMH) and Dr. Neil Risch of Stanford University, to develop a framework for establishing priorities for genetic research. The geneticists originally published their controversial stance in the June 4, 2004, issue of Science, in which they contended that genetic research should focus on diseases whose development and course are unaffected by personal behaviors or FIGURE 10.2
Public approval of selected uses of reproductive genetic testing, 2004
SOURCE: "Figure 3.1. Approval for Different Uses of Reproductive Genetic Testing," in "Chapter 3: Perceptions About Appropriate Uses," 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) TABLE 10.4
Public opinion on prenatal genetic testing, by purpose and demographic characteristics, 2004
PERCENTAGE OF APPROVAL FOR PRENATAL GENETIC TESTING FOR SELECTED PURPOSES:
SOURCE: "Table 3.3. Percentage of Approval for PGD by Purpose and Demographic Characteristics," in "Chapter 3: Perceptions About Appropriate Uses," 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		Fatal	HLA match	Cancer	Sex	Traits
Total		73.2	71.5	59.9	51.3	28.4
Sex	Men	73.7	68.8	64.1	56.9	33.8
	Women	72.6	73.9	56.0	46.0	23.5
Age	18–29	74.5	71.9	62.6	55.3	27.3
	30–49	74.0	70.5	59.5	51.5	26.9
	50+	71.5	72.3	58.7	48.6	30.7
Race/ethnicity	White	73.8	71.5	58.9	49.8	25.2
	Black	72.0	73.4	62.1	58.4	36.0
	Hispanic	73.5	73.5	64.1	51.6	35.4
Religion	Protestanta	76.9	76.3	62.2	53.1	30.1
	Fund/Evangb	57.7	60.4	46.6	43.2	22.7
	Catholic	74.9	75.9	60.2	50.0	27.1
	Other Christianc	69.4	70.4	56.1	49.8	26.3
	Other (non Christian)	79.4	64.3	66.1	54.8	31.1
	No religion	82.9	74.4	71.7	58.8	34.4
Income	Under 25k	71.1	72.0	59.1	53.2	34.6
	25k–49k	73.4	72.0	61.7	48.5	26.4
	50k–74.9k	72.3	71.2	59.3	53.2	25.6
	75+k	77.9	69.5	58.1	50.7	22.9
Education	No college	70.2	72.1	59.9	50.9	32.4
	Some college	73.5	71.5	60.6	52.0	27.2
	College	77.6	73.3	57.7	48.7	19.8
	Post grad	79.9	65.3	61.1	55.5	26.5
Political affiliation	Republicans	67.5	65.4	54.9	45.4	23.0
	Other	69.1	67.0	57.3	48.8	28.9
	Democrats	76.4	74.6	63.3	54.5	33.6
Aware prenatal testing		75.7	72.7	61.0	51.4	27.5
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.
cOther Christian includes all who self-identified as Other Christian, excluding those that additionally self-identified as Fundamentalist or Evangelical.
Note: HLA is human leukocyte antigen.

FIGURE 10.3
Public opinion on whether genetic testing will lead to the
creation of "designer babies," 2004
SOURCE: "Figure 3.2. Percent Who Agreed with the Statement 'Reproductive Genetic Technology will Inevitably Lead to Genetic Enhancement and Designer Babies,'" in "Chapter 3: Perceptions About Appropriate Uses," 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)

environmental influences, which may be easily modified. They cited autism (a complex developmental disability that typically appears during the first three years of life and affects three crucial areas of development: communication, social interaction, and creative or imaginative play), Type 1 diabetes, and Alzheimer's disease as examples of suitable candidates for genetic research.

The geneticists argued that disorders such as Type 2 diabetes, alcohol and nicotine addictions, and other disorders that may be averted by modifying personal behavior should not be the top priorities of genetic research since there are already effective interventions for these disorders. For example, maintaining a healthy weight, eating less, and exercising more can help to prevent Type 2 diabetes, and environmental factors such as smoking bans, high sales taxes, and social pressures have helped reduce smoking and its related health problems. Addiction researchers, among others, hotly contested the geneticists' research agenda, arguing that even though some addictive behaviors might be modifiable through environmental approaches, the social and monetary costs associated with addiction were substantial enough to warrant genetic research dollars.