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Drawing The Line: Public Perspectives On Reproductive Genetic TechnologyAndrea L. Kalfoglou, Ph.D. for the Reproductive Genetics Qualitative Research Team*

Genetics and Public Policy CenterJohns Hopkins University

*The Reproductive Genetics Qualitative Research Team includes, in alphabetical order: B. Bernhardt, M.S., C.G.C., T. Doksum, Ph.D., M.P.H., D. Doukas, M.D., J. Evans, Ph.D., G. Geller, Sc.D., K. Hudson, Ph.D., A. Kalfoglou, Ph.D.,

L. LeRoy, M.B.A, D. Mathews, Ph.D., M.A., N. Reame, M.S.N, Ph.D., F.A.A.N, and J. Scott, M.S., C.G.C.

Public input is frequently missing from the policymaking process. Active public engagement is essential to develop policy that reflects the wide range of perspectives that exist in America today.

WHERE SHOULD WE DRAW THE LINE?: MAJOR THEMES AND CONCERNS 

I. PREVENT DISEASE, DON’T SEEK PERFECTIONMost participants believed that reproductive genetic technology should be researched and available to prevent severe disease. Support wanes for diseases or conditions (such as obesity or depression) that can be controlled by behavioral changes or medication, or that are late onset. There is unease with using technology for socially desirable traits such as eye and hair color, intelligence, or sex. However, a few participants, predominantly men, believe this is the next step in human evolution. “I agree to the point where, if you want to pick your sex, you want to pick the eyes and the color, that to me, personally, that's pushing it. But when you are talking about medical issues, to me, I am a little bit more sensitive with that, and I think that I would want options for myself.” – participant from Mexican American Female Group, Los Angeles II. AMERICAN INDIVIDUALISM IS ALIVE AND THRIVINGParticipants voiced a strong belief that a decision to use technology should rest with the individual. This view was shared even by participants who said they personally would not use the technology because they thought it was “playing god” or because embryos or fetuses might be destroyed. “I'm not sure if it's better to be born with muscular dystrophy and live with that, or to not be born at all, so I can't make that decision. It's a personal one for each individual.” -- participant from Jewish Female Group, Boston III. CONCERNS

1. The availability of the technology will lead to capricious use for enhancement purposes because it’s human nature to want to make life better for your children. This may lead to unrealistic expectations of what it means to be a “perfect child.”

“[S]ome people, they push their kid. They want them to be the best…What if we all want our kid more intelligent. So your kid is 150 [IQ]– I find out, I want mine 180. Ech, no, don't go there. That's too far.” – participant from Chinese American Female Group, Los Angeles

2. Inequity in access could lead to greater class and racial disparities. “[I]t's not the poor families in Africa that are going to be doing this, it's going to be the very affluent who are going to at first have healthier children…and then it becomes the slippery slope, they will have stronger, faster, smarter children…Then you've got these two very disparate classes.” – participant from Caucasian Male Group, Denver

3. Insurers, physicians or government could pressure or coerce people into using the technology. “Are [insurance companies] going to try to take control and say, if you don't have this procedure, we won't cover (you)?” – participant from Evangelical Female Group, Denver

4. Ability to prevent birth of affected individuals will result in decreased efforts to find treatments or cures. “There [would be] fewer people who are sick, but there's less attention given to the sick people. Like there's less...priority given on those diseases. I would want to make sure that, even though they're a minority, that they're still being taken care of somehow. – Woman from mixed race/sex group, Boston

“It’s 15 years in the future. Tina and Tony are both carriers of the CF disease gene and want to have a child. Dr. Ryan has perfected a new technique. Not only can he test for diseases, he can “fix” the genes in an embryo before putting it into Tina’s uterus so that it is free of the CF disease. What do you think about this technology?”

We would like to thank all of the focus group participants. This work was supported by a grant from the Pew Charitable Trusts.

•With a limited amount of explanation, participants had robust discussions about these technologies and their social implications beyond the standard pro-choice/anti-abortion debate. Therefore, we are optimistic about the feasibility of engaging the public in a nuanced dialogue about these issues, and educating them about newer reproductive genetic technologies.• Although there was variance in where participants would draw the line in using these technologies themselves and in what constitutes capricious use, the majority thought that these technologies should be used to prevent disease rather than enhance socially desirable traits. Consensus will be easier to build for policies that limit enhancement uses of these technologies.

To explore the public’s knowledge, attitudes, and beliefs about reproductive genetic technologies.

BACKGROUND

OBJECTIVE

SCENARIO EXAMPLE

FINDINGS

CONCLUSIONS AND IMPLICATIONS

ACKNOWLEDGEMENTS

DESIGN AND METHODS• 21 focus groups lasting approximately 2 hrs.; N = 181 participants.• Conducted in the Spring of 2003 by trained moderators. • Participants recruited through professional focus group company.• Participants asked about hypothetical scenarios on: 1) carrier testing, 2) prenatal diagnosis, 3) preimplantation genetic diagnosis, 4) genetic modification, and 5) sex selection. • Focus group transcripts were analyzed using the qualitative data analysis program NVIVO 2.0.• IRB approval prior to recruitment; participants gave their informed consent.

Location # groups (21) Sex Age Salient

# participants (181) Characteristics

Boston 6 groups 3 F 25-45 J ewish; Hispanic

42 participants 1 M African Amer (AA)

2 Mixed Protestants

Nashville 3 groups 1 F 18-45 AA; advanced edu

26 participants 2 M young men

Los Angeles 6 groups 3 F 25-70 Hispanics; Asians

51 participants 2 M less edu

1 Mixed older parents

Denver 3 groups 2 F 18-35 Evangelicals; adv edu

30 participants 1 M young women

Detroit 3 groups 3 F 25-45 less edu; AA

32 participants Catholics

TABLE 1: FOCUS GROUP CHARACTERISTICS

FINDINGS CONTINUEDWHERE SHOULD WE DRAW THE LINE?: MAJOR THEMES AND CONCERNS

5. Use of technology may contribute to over population, sex ratio imbalance, loss of diversity, or a weakened human gene pool.

“[I]f we were to reduce a lot of the selective pressures from diseases,…then there would be a lot of over population. Resources would be depleted quicker, and we would be probably in a worse position than we were before, from a population perspective..” – participant from Young Men’s Group, Nashville

6. Scientists cannot be trusted. “[Genetics] is moving so fast and it's also owned by companies that have to make a profit, they've got to put this out there before we can fully evaluate it. They do, they have to make money. I don't think it's possible for us to stop scientists. They'll do whatever they want wherever they want to do it.” – participant from Mainline Protestant Female Group, Boston

7. Government cannot enforce regulations because people can travel outside regulated areas, technology would go “underground,” and policies around reproduction often change with administrations. “There is no way to avoid people abusing the advances. That's the problem. And even if there were laws and things like that, when there are people with money, anything can be done.” – participant from Jewish Female Group, Boston

 IV. REPRODUCTIVE GENETIC TECHNOLOGY POLICYMAKING

1. It is feasible and desirable for the government to play a role in a) ensuring the safety and efficacy of this technology; b) monitoring the outcomes for population trends like sex ratio imbalances; and c) promoting equality in access through insurance mandates and public programs.2. It will be challenging to legislate ethically acceptable uses of the technology in a pluralistic society. 3. Any policymaking process should be clear to the public and involve their participation. “Doctors, scientists, religious people, and common people [should be involved in the regulatory process]. People who have had children that have been saved because of the process.” – participant from Mexican American Female Group, Los Angeles