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.
Top
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.
Top
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."
Top
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
Top
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
Top
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.
Top
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
Top
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)
Top
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.
Top
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.
Top
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.
Top
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.
Top
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.
Top
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.
Top
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).
Top |