Genetics and Society
 

Surveys of Scientists by Dr. Isaac Rabino

Current "Going to Survey" project:

Stem Cell Research Survey

Link to summary

Publication pending:

Ethical Issues in Genetic Medicine, a Survey
New Genetics & Society. December 2006. Rabino I.

Results of Recent and Earlier Survey Projects:

Survey of European Scientists on Ethics of Scientific Advancements
Gen Eng News. June 15, 2005. 25(12):6-12, 48-9. Rabino I.
Link to abstract

Stem Cell & Cloning Controversies: Human-Genetics Researchers Tackle the Issues
Gen Eng News. Feb. 15, 2004. 24(4):6-9, 26. Rabino I.
Link to summary

Iceland's Health Sector Database: How Much Opposition Is There From Scientists and Physicians?
Gen Eng News. October 15, 2003. 23(18):6-9. Rabino I.
Link to summary and excerpts

Genetic Testing and Its Implications: Human Genetics Researchers Grapple With Ethical Issues
Sci Technol Human Values. 2003. Summer;28(2):365-402 . Rabino I.
Link to abstract

Gene Therapy: Ethical Issues
Theor Med. 2003. 24(1)31-58. Rabino I.
Link to abstract

How Human Geneticists in U.S. View Commercialization of the Human Genome Project. (correspondence)
Nat Genet. 2001. Sep;29(1):15-6. Rabino I.
Link to summary and excerpts

Geneticists Views on Embryonic Stem Cells. (correspondence)
Science. 2001. Aug 24;293(5534):1433-4. Rabino I. Link to summary

The Biotech Future
American Scientist. March-April. 1998. 86:110-112. Rabino I.
Link to summary and excerpts

Ethical Debates in Genetic Engineering: U.S. Scientists' Attitudes on Patenting, Germ-Line Research, Food Labeling, and Agri-Biotech Issues
Politics Life Sciences. 1998. Sep;17(2):147-63. Rabino I.
Link to abstract

Societal and Commercial Issues Affecting the Future of Biotechnology in the United States: A Survey of Researchers' Perceptions
Naturwissenschaften. 1998. Mar;85(3):109-16 . Rabino I.
Link to abstract

What U.S. Researchers Think of Regulations and Regulators:
If Regulators Contain Their Political Excesses and Become More Effective, DNA Researchers Will Give Them Guarded Approval

Bio/Technology. Feb. 1996. 14:147-150. Rabino I.
Link to summary and excerpts

German Genetic Engineering Scientists and the German Public: Complementary Perceptions in a Changing European Context
Public Understand. Sci. 1994. (3) 365-384. Rabino I.
Link to abstract

How European and U.S. Genetic Engineering Scientists View the Impact of Public Attention on Their Field: A Comparison
Sci Technol Hum Values. 1994. Winter:19(1):23-46. Rabino I.
Link to abstract

A Study of Attitudes and Concerns of Genetic Engineering Scientists in Western Europe
Biotech Forum Europe: Intl J of Biotechnology. 1992. 9(10):636-640. Rabino I.
Link to summary and excerpts

The Impact of Activist Pressures on Recombinant DNA Research
Sci Technol Hum Values. 1991. Winter:16(1):70-87. Rabino I.
Link to abstract


Stem Cell Research Survey: Current Ongoing Project

A number of professional societies in the U.S. and Europe, both biological and medical, are participating in the survey, which will ascertain both individual and aggregate-professional views on this important public policy debate.

The 49-question survey instrument asks scientists and physicians working on both basic research and clinical genetics for:

  • Their views on the various and complex ethical issues associated with human embryonic stem (hES) cell research and technology, and the science of regnerative medicine, including therapeutic cloning.
  • Their assessments of the possibilities and dangers of the new technology and their opinions concerning the current debate in American society about this promising but controversial field of scientific endeavor.
  • Their perceptions of the implications of government regulations for medical research, clinical practice, and healthcare, and the likely ramifications of such policy for scientific progress and productivity in America and for U.S. competitiveness worldwide.


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Results of Recent and Earlier Survey Projects


Survey of European Scientists on Ethics of Scientific Advancements: Germans More Guarded via-a-via Human Genetics

Gen Eng News. June 15, 2005. 25(12):6-12, 48-9. Rabino I.

This article offers the views of 196 German researchers and 198 European researchers from 30 other countries, the largest from: England (21%); France (12%); Belgium (8%); the Netherlands (8%); Italy (7%); Switzerland and Israel (5% each); Spain (4%); Denmark, Sweden, and Iceland (3.5% each); and Ireland (3%). The survey demonstrates where they stand on a variety of ethical issues important to the general public and essential to national, European Union, and international policy decision-making.

They include: genetic testing and questions of privacy that result from screening techniques; the possibilities for gene therapy and its potential uses, as well as criticisms that have been leveled against this aspect of genetic medicine; and the concerns involved in human embryonic stem cell research and therapeutic cloning. The survey also reveals the issues on which German researchers appear to have a distinct perspective.

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Stem Cell & Cloning Controversies: Human-Genetics Researchers Tackle the Issues

Gen Eng News. Feb. 15, 2004. 24(4):6-9, 26. Rabino I.

Summary and excerpts:
A survey of 1,229 U.S. researchers and 408 scientists outside the U.S. in 2001 and 2002 was carried out to let individual biological scientists know what their specialist colleagues think about the ethics of cloning and stem-cell research, and to help better inform the general public.

The survey population included members of the American Society of Human Genetics and the European Molecular Biology Organization. Many had more than one specialty, with molecular genetics being the most represented (at just over 40%); about three-quarters were academic researchers; industry scientists were 13% of U.S. respondents and 5% outside the U.S., and government scientists 9% and 15%, respectively. Two-thirds of respondents have been in the field for more than ten years, and most of the rest for at least three years. Among scientists outside the U.S., more than half were European (Great Britain, 20%; Germany 16%; France, 10%; Belgium, Italy, and The Netherlands 6%; Switzerland, 4%; Denmark, Iceland, Ireland, Spain, and Sweden, 3% each; Austria, Finland, and Norway, 2% each). Respondents from candidates in Canada represented 20%, Asia, most from Japan, 10%; Australia/New Zealand, 8%; South and Central America 4%, and Israel, 4%. In the U.S., 56% of respondents were men and 43% women, while outside the U.S. 64% were male.

Findings: Ethics of research
Respondents' acceptance levels for the ethics of stem-cell, cloning, and human-embryo research:

Ethical acceptance

U.S. %

Outside U.S. %

Using cells from patient's body to produce stem cells for treatment

92

90

Therapeutic cloning (cloning of human cells for replacement tissue)

92

85

Producing stem cells without intermediary stage as embryos

85

77

Using embryos to produce medically valuable cells

68

56

Destruction of human embryos in the research process

54

40

Human cloning research barring implantation in a uterus

34

19

Creation of human embryos for research purposes

18

14

Reproductive cloning of whole human beings

9

3

 

Acceptance varied according
to source of embryo
U.S. % Outside U.S. %
Embryos retrieved from aborted fetal tissue is acceptable 77 63
Embryos originally created for fertility treatment, ultimately to be discarded is acceptable 59 51
Creation of embryos specifically for research is not acceptable 73 78
Destruction of human embryos not acceptable 46 60
Taking cells from patient's body to produce stem cells for treatment versus outside host embryos 92 vs. 68 90 vs. 56
Future possibility of production of stem cells without intermediary stage of embryo acceptable 85 77

The acceptability of human cloning research, barring implantation of the cloned embryo in a human uterus, was starkly different worldwide according to respondents' gender, with the following percentages finding it acceptable:

  • 42% of men and 23% of women (U.S.)
  • 23% men, 11% women (outside U.S.).

Respondents from Canada, Australia, and New Zealand were generally closer in views to those from the U.S., while Europeans and Asians generally showed slightly less acceptance. (However, breaking down data of respondents outside the U.S. results in raw numbers that are not very large.)

Other issues raised by the scientists in their comments included:

  • questions about enhancement
  • rights of prospective children
  • ethics of embryo selection in fertility clinics
  • equality of access to human genetics technology
  • scientific and financial priorities

Findings: Who should regulate what?
Generally researchers indicated a belief that human genetics research demands careful oversight, even though research importance outweighed risks. And oversight degree depended on technology.

  • Cloning of human beings, which is generally not considered acceptable, should be regulated: 82% (U.S.); 84% (outside U.S.)
  • Favor regulation of human embryo research: 54% (U.S.), 74% (outside U.S.)
  • Favor oversight of stem-cell research: 28% (U.S.), 44% (outside U.S.)

Conclusion:

Generally, fear of a slippery slope does not appear to be justified among these research scientists, as long as there is a clear line not to be crossed over as to what is defined as "human." Ethical issues go to the heart of what is seen as the definition of human. Embryonic stem cell research can be done with cells extracted from in vitro fertilization before implantation in a uterus, at the fourth day of cells dividing in culture, and well before the appearance of a small group of cells called "primitive streak (on day 14, determining the embryo's main body axes and the beginning of the process of defined as "sentience" or "feeling"), and well before the heart begins to beat (day 22). Nevertheless, it appears one researcher's comment reflects those of others: "social and ethical issues will increase, not diminish."

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Iceland's Health Sector Database: How Much Opposition Is There From Scientists and Physicians?
Gen Eng News. October 15, 2003. 23(18):6-9. Rabino I.

Summary and excerpts:

Background: The creation of a centralized health-care database, known as National Health Sector Database, for the entire Icelandic population of 270,000 has been surrounded by controversy. Although the database had wide public support (82%, Gallup poll), when it was first proposed in 1998 there was strong opposition from Icelandic scientists and physicians. They were concerned about patients' privacy, academic freedom, and the government's granting the company Decode Genetics (Reykjavik) a 12-year monopoly to analyze and market the data. Iceland's Health Ministry changed the proposal: privacy would be protected via encryption; citizens could request their data be excluded; and Icelandic scientists could access the database for noncommercial research after applying to a committee. Iceland's legislature passed the bill, but Icelandic scientist and physician opposition remained heated, especially regarding Decode's monopoly and the adequacy of privacy procedures. There was also some question about the assumption that Iceland's population would have less genetic variability than other European nations. Scientists in the human genetics field outside Iceland shared concerns about the commercial aspects of the project.

Survey Goals: The current project sought to find out what issues remain, and which ones have been solved from the point of view of Icelandic scientists and physicians. In 2002, Rabino interviewed Icelandic scientists over a three-week period and followed up with a mailed survey of 350 who worked in the field of human genetics, for which the response rate was 37%.

Survey Findings: Results were surprising considering the strength of earlier opposition.

  • 81% favored creation of the Healthcare Database (15% opposed).
  • 78% favored cross-linking medical and genealogical data, gathered with presumed consent, along with genetic data obtained with informed consent (15% opposed).
  • 76% felt privacy had been adequately protected (10% didn't; 14% unsure).
  • 62% thought government oversight was adequate (14% inadequate; 24% not sure).
  • 45% thought access by scientists outside the Decode company would be improved (21% thought it would remain the same; 15%, worsen).
  • On the potential for gene discovery from cross-referencing, 76% saw excellent or good potential (17% fair or poor; 7% not sure). Views on potential for medical advances had similar results.
  • Lastly, 48% judged the potential for profit to be a positive factor; only 7% saw it as negative; and 29% thought it made no difference (16% unsure).

Decode scientists' views broken out and compared:

  • 95% of Decode scientists favored creation of the database (versus 70% of other scientists and 71% of physicians);
  • 88% favored cross-linking databases (vs. 73% other scientists; 71% physicians);
  • 90% thought privacy protection was adequate (vs. 67%; 71%);
  • 65% saw government oversight as adequate (vs. 58%; 67%);
  • 53% believed it would improve scientists' access to health-care information (vs. 36%; 46%). Academic scientists were most negative: although 36% saw improvement, 30% saw no change and 21% feared difficult access.
  • 86% saw excellent or good potential for gene discovery (vs. 67%; 63%).
  • 86% saw excellent or good potential for medical advances (vs. 64%; 71%).
  • 58% saw potential for profit as a positive factor, 2% saw it as negative, and 30% saw no difference (vs. other scientists: 30%, 15%, 36%; and physicians: 58%, 8%, 21%).

Conclusion: Although scientific truth is not subject to rules of democracy, answers to ethical questions of science surely are influenced by what the majority of a scientific community thinks.

References applicable to this summary

  • Physicians wary of scheme to pool Icelander's genetic data. Science. 998. 281:891-92. Enserink, Martin
  • DNA study deepens rift over Iceland's genetic heritage. Nature. 2003. 421:678. Abbott, Alison
  • How human geneticists in the U.S. view commercialization of the
    Human Genome Project. Nature Genetics. 2001. 29:15-16
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Genetic Testing and Its Implications: Human Genetics Researchers Grapple With Ethical Issues

Sci Technol Human Values. Summer 2003. 28(2):365-402. Rabino I.

Abstract and excerpts:
To better understand ethical issues involved in the field of human genetics and promote debate within the scientific community, the author surveyed scientists who engage in human genetics research about the pros, cons, and ethical implications of genetic testing. This study contributes systematic data on attitudes of scientific experts. The survey finds respondents are highly supportive of voluntary testing and the right to know one's genetic heritage. The majority consider in utero testing and consequent pregnancy termination acceptable for cases involving likelihood of serious disease but disapprove for genetic reasons they consider arbitrary, leaving a gray area of distinguishing between treatment of disorders and enhancement still to be resolved. While safeguarding patient confidentiality versus protecting at-risk third parties (kin, reproductive partners) presents a dilemma, preserving privacy from misuse by institutional third parties (employers, insurers) garners strong consensus for legislation against discrimination. Finally, a call is made for greater genetic literacy.

For this survey, 12-page questionnaires were mailed to the total 3,632 U.S. members of the American Society of Human Genetics. A total of 1,236 questionnaires were returned, 1,229 of which met all eligibility criteria. More than two-thirds of the eligible respondents have been working in the field of genetics for more than ten years, 29% for three to ten years, and only 1% for less time. Most (75%) were academic researchers, 13% work in industry, and 9% in government (the latter's responses differed significantly in some areas).

This article [deals] specifically with the varied and complex ethical difficulties brought about by new abilities in genetic testing and diagnosis: whether to screen for a gene and under what conditions, what steps to take as a result of findings about a predisposition and on what basis, and who has the right to genetic information so generated and who does not.

Among the question topics: what can be accomplished?; who should be tested?, why?; patient choice and compulsory testing; a fully informed patient; operative prevention; genetic risk and pregnancy termination; cure versus enhancement; a new eugenics for the new genetics?; sex selection; gene significance: heredity or environment?; overestimating genes; privacy considerations and ownership of information; confidentiality and discrimination concerns; patients' privacy rights versus third parties' rights to know; and DNA databanks for crime prevention and law enforcement.

Link to abstract on journal site

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Gene Therapy: Ethical Issues

Theor Med. 2003. 24(1)31-58. Rabino I.

To discern the ethical issues involved in current gene therapy research, to explore the problems inherent in possible future gene therapies, and to encourage debate within the scientific community about ethical questions relevant to both, we surveyed American Society of Human Genetics scientists who engage in human genetics research. This study of the opinions of U.S. scientific experts about the ethical issues discussed in the literature on gene therapy contributes systematic data on the attitudes of those working in the field as well as elaborative comments. Our survey finds that respondents are highly supportive of the potential use of somatic cell gene therapy to cure serious diseases in adults and children as well as prospective offspring. A clear majority, however, believe that using such genetic techniques for enhancement purposes is unacceptable. Delineating the line between disease/disorder and improvement/enhancement poses a problem not easily resolved and one conducive to the growth of slippery-slope apprehensions. The majority of respondents also advocate germ-line therapy, in theory at least, and under similar restrictions, but they recognize the roadblock that the existence of unanticipated negative consequences currently presents. Another complex matter involves trying to determine appropriate reasons for choosing target diseases for research, for which the dichotomy between rare single-gene and common multifactorial diseases reveals an ongoing dilemma.

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How Human Geneticists in U.S. View Commercialization of the Human Genome Project. (correspondence)
Nat Genet. 2001. Sep;29(1):15-6. Rabino I.

Summary and excerpts:
Scientists were surveyed about the following:

  • What are the benefits and disadvantages of commercialization?
    90% see excessive patenting as a problem and 86% of industry scientists think the same.
  • What should be patentable?
    77%-78% of academic and government scientists disapprove of patenting human DNA; 61% of industry scientists disapprove
  • Should the publicly funded HGP patent gene sequences?
    62% against
  • Should NIH reinstate its rule requiring commercial partners to charge 'reasonable' prices for pharmaceutical products developed that were based on NIH research?
    69% yes; 12% no
  • If there is patenting of sequences, should it be broad or narrow?
    76% say narrow
  • To what extent has human-DNA patenting limited scientists' research, and how does this affect their outlook on DNA patenting?
    49% at some time, 46% never--but 3/4 of each group disapprove of patenting.
  • What is the outlook for human genetics?
    75% believe it will fulfill therapeutic and hereditary condition promises.

The Human Genome Project (HGP) has become highly controversial due to the entrance of commercial competition. Recent literature explores such concerns as patenting, secrecy, excessive duplication of efforts, and focus on profits rather than quality of research.

To assess the opinions of human geneticists on these issues, we mailed questionnaires to the 3,632 scientist members of the American Society of Human Genetics residing in the U.S. (see table 1) We received 1,229 anonymously completed questionnaires that met our criteria for eligibility (only scientists who have at some point engaged in human genetics research). The relatively high response rate of 44% indicates that the issues are of interest to many researchers.

  • Link to free full article with tables on journal website in html format

  • Link to free full article with tables on journal website in pdf format

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  • Geneticists Views on Embryonic Stem Cells. (correspondence)

    Science. 2001. Aug 24;293(5534):1433-4. Rabino I.

    The media coverage of the controversy over embryonic stem cell research cites the arguments of many individuals or selected groups, but what opinions do specialists in human genetics research hold about the issue? Last year I conducted a survey of U.S. members of the American Society of Human Genetics (1). The survey questions covered many ethical issues in the field of human genetics, several of which dealt specifically with embryonic stem cell research.

    Of the more than 1200 respondents, 87% agreed with the 1999 ruling by the U.S. Department of Health and Human Services that exempted human embryonic stem cells from the Congressional ban on the use of federal funds for human embryo research. The ruling determined that the ban did not apply to human embryonic stem cells primarily because, by themselves, they do not have the capacity to develop into human beings. Most of these scientists (71%) favored discontinuance of the ban itself. But whether embryonic stem cell research was considered ethically acceptable depended on the source of the embryos. Significant majorities responded that it was acceptable to use embryos retrieved from aborted fetal tissue and embryos originally created for fertility treatment (77 and 59%, respectively); however, 73% of respondents viewed creation of human embryos for research purposes as ethically unacceptable.

    Thus, although the respondents are generally opposed to the creation of embryos for research, most appear to view the potential medical benefits as such that we should take advantage of the existence of unused embryos that would ultimately be discarded.

    References and Notes:
    1. The survey was part of a study sponsored by the Richard Lounsbery Foundation. A 12-page survey was sent to 3632 U.S. members of the American Society of Human Genetics, and 1236 surveys were returned, 1229 of which met all eligibility criteria.


    Link to letter on journal site (subscription required)

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    The Biotech Future

    American Scientist. March-April 1998. 86:110-112. Rabino I.

    Summary and excerpts:
    Given the complex social climate that is developing around genetic technology, what glimpses can we get of the future of this, the most rapidly growing of the sciences?

    Over the past decade I have conducted a series of surveys in the U.S. and in Europe to get a scientists’-eye view of this question and detect trends in the context in which scientists are working. I have examined my colleagues’ perceptions of several questions: How do societal and political factors affect the work of recombinant DNA scientists? Are things getting better or worse? What does all the controversy mean for the future of biotechnology? And what are the main threats that must be overcome in order to realize the promise of this new field?

    I found a mixed picture: an assessment of public perception that differs sharply from one side of the Atlantic to the other, growing optimism about public acceptance of biotechnology in the U.S. (and support for that optimism in surveys of the public), but pessimism in Europe, and some signals that a number of challenges and dangers lie ahead for those working in this field.

    Public attention is the ultimate driving force behind science and technology funding—but also behind regulation, political opposition and drawn-out court battles. Among 430 U.S. scientists surveyed in 1988-89, nearly one-quarter saw public attention as more harmful than beneficial, but almost twice as many saw more benefit than harm. By 1995, surveyed scientists were more optimistic: more than half saw more benefit than harm; only one-fifth saw greater harm than good. Among European scientists surveyed in 1992, one-third saw more harm than benefit and only one quarter saw benefit overall. In Germany nearly two-thirds viewed public attention as harmful. U.S. scientists generally indicated government-agency regulations were reasonable, whereas the opposite was found in Europe.

    U.S. scientists weren’t as optimistic about funding trends and commercialization, however. In 1995, 60% said they had experienced a reduction in government funding, 17% in foundation funds, and 14% in industry funding. Government funding accounted for 69% of their support; 16% came from industry; and 3% from universities. Among academic scientists, one-third of those surveyed in 1995 were collaborating with industry to get funding. And scientists approved of such collaboration at a high rate of 96%, because the necessity for funding was so clear. But among that group, 65% had serious reservations about the commercialization of recombinant DNA research. The two main concerns: more than half saw commercialization as breeding secrecy rather than scientific openness; and half of the scientists felt commercialization shifts the focus too much away from science and toward financial gain, particularly in basic science. Independent studies confirm their concerns.

    Possibly the greatest promise of medical biotechnology is to reduce human suffering by eliminating genetic diseases such as Huntington’s, cystic fibrosis or sickle-cell anemia, not just for a given individual but for successive generations, which would require the use of germ-line therapy. This controversial treatment was advocated by two-thirds of the scientists surveyed in 1995.

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    Ethical Debates in Genetic Engineering: U.S. Scientists' Attitudes on Patenting, Germ-Line Research, Food Labeling, and Agri-Biotech Issues

    Politics Life Sciences. 1998. Sep;17(2):147-63. Rabino I.

    A 1995 survey of 1,257 scientists working in the field of recombinant DNA research indicates wide areas of agreement as well as some noteworthy divisions when it comes to such thorny questions as patenting, germ-line research, food labeling, and biodiversity. In general, the scientists surveyed approve of patenting living organisms that result from rDNA research, but vary significantly on what should be patentable. They advocate human germ-line therapy, yet have reservations about using it for any but serious diseases. They oppose mandatory labeling of biologically engineered food products, but understand that the public has a right to know and advocate openness. Finally, they favor development of genetically modified crops, but recognize potential threats to biodiversity and maintain that publicly funded researchers should be legally obligated to consider the potential environmental effects of their research. Some clear differences arise between scientists working in industry and those in academia and between men and women.


    Societal and Commercial Issues Affecting the Future of Biotechnology in the United States: A Survey of Researchers' Perceptions

    Naturwissenschaften. 1998. Mar;85(3):109-16 . Rabino I.

    A 1995 survey of 1,257 U.S. recombinant DNA researchers assessed how they view outside factors affecting their work, including public and media attention; regulation; funding; international competition; commercialization of research and university/industry collaboration; health care reform efforts; and patenting laws and policies. Generally, respondents view public attention as having had positive effects on biotechnology progress, but they are concerned about the decrease in R&D funding, especially from government; the loss of scientific openness and basic-research quality caused by academic/industrial collaboration; international competition, particularly from Japan and Germany; overly stringent regulations that control R&D processes rather than products; inefficient regulatory agencies focused on irrelevant criteria; and threats to basic biomedical research from the short-term cost focus of managed-care companies.

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    What U.S. Researchers Think of Regulations and Regulators:
    If Regulators Contain Their Political Excesses and Become More Effective, DNA Researchers Will Give Them Guarded Approval

    Bio/Technology. Feb. 1996. 14:147-150. Rabino I.

    Summary and excerpts:
    This survey, conducted in the spring of 1995, sought the views of recombinant DNA (rDNA) researchers on a number of factors affecting their work, such as public attention, funding, international competition, commercialization of research, university and industry collaboration, health care reform, and regulatory bodies and policies in the U.S. The latter is the subject of this article.

    The survey was conducted by mail. Overall response rate was 63%, for 1,268 responses. Among survey respondents, 1,257 met eligibility criteria (work in rDNA research). Eighty-four percent of respondents had been engaged in rDNA research for seven years or more; 11% for three to six years; and 2% for one or two years. Almost all, 97%, viewed rDNA research as indispensable to their work. Nearly half (45%) are in molecular genetics, 16% are microbiologists, another 16% are cell biologists, with the remainder in a variety of specialties. Academic scientists made up 77% of the respondents; 62% worked in large universities. Industry scientists represented 18% of respondents, with only 5% employed by the government. Most respondents main funding source was the government (69%), although 16% had their main funding from industry.

    Respondents were asked to evaluate, based on their experience, the overall performance of any of the federal agencies involved, including the U.S. Department of Agriculture (USDA), Environmental Protection Agency (EPA), Food and Drug Administration (FDA), and National Institutes of Health Recombinant DNA Advisory Committee (NIHRAC). Ratings took into account relevance, responsiveness, user friendliness, reasonableness, and efficiency.

    NIHRAC was perceived most positively (see Table), and the EPA most negatively, with the FDA and USDA sharing a middle position. Industry scientists gave all four agencies a lower rating than did academic and government researchers.

    Table: Ratings of "excellent" and "good" totals combined for the four regulatory/advisory agencies.
    Percentage (and number) of respondents working in government, academia, and industry who rated the various regulatory agencies as "excellent" or "good" on a scale that also included "fair," "poor," and "cannot rate."

    Agency

    Government

    Academia

    Industry

    NIHRAC

    86 (43)

    87 (571)

    77 (122)

    FDA

    56 (18)

    56 (160)

    47 (65)

    USDA

    55 (11)

    50 (136)

    50 (45)

    EPA

    48 (11)

    41 (89)

    36 (29)

    Although the majority of researchers gave most of the agencies a positive review, they were encouraged to submit comments. The full published report gives samples of what they wrote. Here, simply a summary of a representative sampling is given.

    Common complaints regarding the EPA revolved around slowness and inefficiency. Many noted lack of clarity, which was seen as stemming from their lack of expertise and experience. Some said the agency was adversarial, while others thought they had a problem with understaffing.

    Slowness and inefficiency were often mentioned for the FDA. Many saw the regulations as unclear or burdened inappropriately with history, that is, outdated. Bureaucracy and loss of mission were also recurring themes. Fear of mistakes and failure to look at cost/benefit ratios were also noted by the researchers. Mismanagement or incompetence were cited by some as cause of the problems.

    Both the EPA and FDA were accused by some of political decision-making.

    A common issue cited by respondents regarding the USDA was a perceived inability to distinguish between harmless and infectious materials. They were accused of not being up to date with science and technology, of being slow in issuing permits, bureaucratic, and unfriendly or adversarial.

    The NIHRAC was most well thought of, but there were a few dissenters. Some objected to requests for information without practical consequences, and others of wasted time to fill out forms that aren't enforced (because the agency is advisory only).

    All of the agencies were accused of outdated and unclear guidelines, including the NIHRAC.

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    German Genetic Engineering Scientists and the German Public: Complementary Perceptions in a Changing European Context

    Public Understand. Sci. 1994. (3) 365-384. Rabino I.

    In a 1991 survey, we assessed how genetic engineering scientists in Europe viewed the influence of public attention on their field. In almost every respect, by far the most negative responses came from scientists in West Germany: only 10% perceived public attention as beneficial and 63% perceived it as harmful; more than 90% worried that Germany could lose its competitive edge in this field; and more than 70% viewed national regulations as too strict. Open-ended comments from researchers reinforce the negative German picture. Major complaints include ill-trained, incompetent local enforcement offices often using delaying tactics to avoid making decisions; unnecessary compulsory courses; massive bureaucracies; endless paperwork; and mandatory 'safety offices' that only generate more paper. Scientists and journalists point to three causes for public opposition: one-sided media coverage, sensitivity to World War II history (eugenics), and powerful activist opposition. The 'Eurobarometer' 1991 and 1993 surveys of the public show that German scientists' perceptions of the public attitude are based on reality: public acceptance is low, and has been deteriorating further since 1991. Although the national German laws regulating biotechnology have now been relaxed, it remains to be seen whether the attitude of the public, as well as local and state-level regulations, will follow the same trend. To improve public acceptance, German genetic engineering scientists may need to make a long-term commitment to communications and education about all aspects of their field, including risks. Although there is no guarantee that this will bring quick results (it apparently has not done so in the Netherlands, for instance), cases such as Denmark suggest that it may improve acceptance in the long term.

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    How European and U.S. Genetic Engineering Scientists View the Impact of Public Attention on Their Field: A Comparison

    Sci Technol Hum Values. 1994. Winter:19(1):23-46. Rabino I.

    The recent surveys of genetic engineering scientists have assessed how scientists in the United States and in Europe view the influence of regulation and public attention on recombinant DNA research. Generally, European researchers are more negative about this issue: They feel that public attention has hampered progress in the field more than it has helped it. The probable cause for this difference is that European countries tend to have more--and more stringent--regulations on bioengineering than the United States, although there are also national differences in the climate for bioengineering research. On the other hand, scientists in the United States seem extremely concerned about competitiveness, especially relative to Japan.

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    A Study of Attitudes and Concerns of Genetic Engineering Scientists in Western Europe

    Biotech Forum Europe: Intl J of Biotechnology. 1992. 9(10):636-640. Rabino I.

    Summary and excerpts:
    Methods:
    This survey of European recombinant DNA researchers assesses the impact of public attention and regulation on their work. An eight-page questionnaire was mailed to 739 scientists associated with the European biotechnological community, as represented by the European Molecular Biology Organization (EMBO, a multinational organization devoted to basic research in molecular biology) and its associate members around the world. A follow-up mailing was sent one month later. Among 586 respondents, 163 were ineligible for the study (in the wrong field of work). Thus the rate of return by those who have engaged in recombinant DNA research is 400 out of at most 576 eligible scientists, or at least 69%. Among the respondents, about 93% indicate the role of recombinant DNA research in relation to their work as "indispensable"; 91% say that despite controversies, they are unlikely ever to stop using the recombinant DNA research technique; more than 90% thought it useful to follow up on this study within a few years; and over a third added written comments at the end of the questionnaire.

    Findings: A majority (86%) of the respondents feel that public attention (questionnaire description: "publicity in the press and on television") has had an impact on recombinant DNA research, with 33% considering it negative, 27% seeing it to be equally negative and positive, and 26% who view it as beneficial. A minority of 14% perceive no impact. In their individual research, they experienced more positive than negative effects (67% "no negative effects on my research"; but 18% said it meant they had to "delay or cancel an experiment"). Favorable effects of public attention on individual research are mentioned in much higher numbers: 33% indicated "greater interest on the part of funding agencies"; 26% "greater awareness of safety precautions"; 18% "greater interest and support from colleagues"; and 13% "greater administrative support." Respondents who chose to make comments often made "harsh" comments, indicating the public was overreating because they don't understand the issues, and information was presented inaccurately, and sometimes manipulatively. Many of the scientists (47%) express concerns that adverse publicity will result in regulatory restrictions or delays that could have a negative impact. Among the 47%, 38% are worried about the effect on their competitive edge professionally and 18% about their publication record.

    Overall, the most positive responses come from France and the United Kingdom; the most negative from Germany and Switzerland (with 90% in each worried their nation could lose its competitive edge because of regulations and controversies). Scientists in France and the UK are concerned about the German regulations too, fearing they could spread to the rest of Europe via European Community directives. In fact, 63% of German scientists see widespread public attention as somewhat or very harmful.

    The scientists offer a number of policy recommendations:

    • 84% agree that public and political concern have made scientists more aware of the need to be open and informative with the public about the methods and aims of their research.

    • 64% feel that professional ecologists should be invited to participate in the regulatory process so that more responsible regulations for environmental protection can be developed. Another 22% are not sure.

    • Participation by social scientists, political scientists, and scholars of ethical and theological issues drew a less definite response: 44% favor it; 39% do not.

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    The Impact of Activist Pressures on Recombinant DNA Research

    Sci Technol Hum Values. 1991. Winter:16(1):70-87. Rabino I.

    This survey of 430 recombinant DNA scientists currently engaged in research assesses the impact of public attention, political advocacy, and litigation on their work. The findings show that most researchers feel they have benefited from public attention to the field, but 34% feel they have been negatively affected. Sixty-one perecent agree that as a result of litigation by activists, greater social responsibility on the part of scientists working in the field is required. Considerable concern is expressed regarding public ignorance, uninformed controversy, and the future impact of activist-inspired litigation, especially on the possible loss of the U.S. competitive edge. Recommendations are made for a public education campaign focused on priority-target audiences (i.e., regulatory decision makers, other scientists, members of the media, and environmentalists).

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