Council for Responsible Genetics

Last updated

The Council for Responsible Genetics (CRG) was a nonprofit NGO with a focus on biotechnology.

Contents

History

The Council for Responsible Genetics was founded in 1983 in Cambridge, Massachusetts.

Council for Responsible Genetics
AbbreviationCRG
Formation1983
Founded at Cambridge, Massachusetts
Type non profit
Purpose biotechnology

An early voice concerned about the social and ethical implications of modern genetic technologies, CRG organized a 1985 Congressional Briefing and a 1986 panel of the American Association for the Advancement of Science, both focusing on the potential dangers of genetically engineered biological weapons. [1] Francis Boyle was asked to draft legislation setting limits on the use of genetic engineering, leading to the Biological Weapons Anti-Terrorism Act of 1989. [2]

CRG was the first organization to advance a comprehensive, scientifically based position against human germline engineering. [3] It was also the first to compile documented cases of genetic discrimination, laying the intellectual groundwork for the Genetic Information Nondiscrimination Act of 2008 (GINA). [1]

The organization created both a Genetic Bill of Rights and a Citizen's Guide to Genetically Modified Food. Also notable are CRG's support for the "Safe Seeds Campaign" (for avoiding gene flow from genetically engineered to non-GE seed) and the organization of a US conference on Forensic DNA Databanks and Racial Disparities in the Criminal Justice System. [1] In 2010 CRG led a successful campaign to roll back a controversial student genetic testing program at the University of California, Berkeley. [4] In 2011, CRG led a campaign to successfully enact [CalGINA] in California, which extended genetic privacy and nondiscrimination protections to life, disability and long term care insurance, mortgages, lending and other areas.[ citation needed ]

CRG issued five anthologies of commentaries:

CRG "fosters public debate about the social, ethical and environmental implications of genetic technologies." They list three central principles: [1]

Selected Issues
Cloning and Human Genetic Manipulation
Women and Biotechnology
Genetic Testing, Privacy and Discrimination
Biotechnology and Agriculture
Biowarfare
Genetic determinism

In 2007, CRG hosted a retreat to refresh the mission statement and determine goals for the future of the organization. The outcome was that CRG should:

Notable ProjectsDescription
Genetic Bill of Rightsa set of guidelines to aid in the understanding of CRG's viewpoint on the ethical, legal, social, and environmental implications of biotechnology, meant to foster discussion on the values CRG feels are at risk due to advancing genetic technologies
Race and Geneticsa project including briefing papers and community workshops on various areas where race and genetics intersect, such as racialized medicine, race in science, and racial profiling in DNA databases
Gene Mythsa series of articles disputing what CRG feels are exaggerated and misrepresented ideas about the power of genetic technologies
Forensic DNA a discussion on the use and regulation of forensic DNA databases with concern for privacy and civil rights

The pioneering contributions of CRG to public interest initiatives concerned with appropriate use of biotechnologies are recounted in the book Biotech Juggernaut: Hope, Hype, and Hidden Agendas of Entrepreneurial Bioscience (Routledge, 2019).

GeneWatch

The CRG publishes Genewatch, [5] America's first and (according to CRG in 2009) only magazine dedicated to monitoring biotechnology's social, ethical and environmental consequences. The publication covers a broad spectrum of issues, from genetically modified food to biological weapons, genetic privacy and discrimination, reproductive technology, and human cloning. [1] Established in 1983, [6] the publication won the Utne Independent Press Award for General Excellence in the category of newsletters in 2006. [7]

Funding

A major source of CRG's funding is the Ford Foundation, which provided $420,000 in grants during 2005-2007. [8]

See also

Related Research Articles

<span class="mw-page-title-main">Biotechnology</span> Use of living systems and organisms to develop or make useful products

Biotechnology is a multidisciplinary field that involves the integration of natural sciences and engineering sciences in order to achieve the application of organisms, cells, parts thereof and molecular analogues for products and services.

<span class="mw-page-title-main">Genetic engineering</span> Manipulation of an organisms genome

Genetic engineering, also called genetic modification or genetic manipulation, is the modification and manipulation of an organism's genes using technology. It is a set of technologies used to change the genetic makeup of cells, including the transfer of genes within and across species boundaries to produce improved or novel organisms. New DNA is obtained by either isolating and copying the genetic material of interest using recombinant DNA methods or by artificially synthesising the DNA. A construct is usually created and used to insert this DNA into the host organism. The first recombinant DNA molecule was made by Paul Berg in 1972 by combining DNA from the monkey virus SV40 with the lambda virus. As well as inserting genes, the process can be used to remove, or "knock out", genes. The new DNA can be inserted randomly, or targeted to a specific part of the genome.

<span class="mw-page-title-main">Genetically modified food</span> Foods produced from organisms that have had changes introduced into their DNA

Genetically modified foods, also known as genetically engineered foods, or bioengineered foods are foods produced from organisms that have had changes introduced into their DNA using various methods of genetic engineering. Genetic engineering techniques allow for the introduction of new traits as well as greater control over traits when compared to previous methods, such as selective breeding and mutation breeding.

The term modifications in genetics refers to both naturally occurring and engineered changes in DNA. Incidental, or natural mutations occur through errors during replication and repair, either spontaneously or due to environmental stressors. Intentional modifications are done in a laboratory for various purposes, developing hardier seeds and plants, and increasingly to treat human disease. The use of gene editing technology remains controversial.

DNA banking is the secure, long term storage of an individual’s genetic material. DNA is most commonly extracted from blood, but can also be obtained from saliva and other tissues. DNA banks allow for conservation of genetic material and comparative analysis of an individual's genetic information. Analyzing an individual's DNA can allow scientists to predict genetic disorders, as used in preventive genetics or gene therapy, and prove that person's identity, as used in the criminal justice system. There are multiple methods for testing and analyzing genetic information including restriction fragment length polymorphism (RFLP) and polymerase chain reactions (PCR).

Gregory Stock is an American biophysicist, best-selling author, biotech entrepreneur, and the former director of the Program on Medicine, Technology and Society at UCLA’s School of Medicine. His interests lie in the scientific and evolutionary as well as ethical, social and political implications of today's revolutions in the life sciences and in information technology and computers.

The Center for Genetics and Society (CGS) is a non-profit information and public affairs organization based in Berkeley, California, United States. It encourages responsible use and regulation of new human genetic and reproductive technologies.

<span class="mw-page-title-main">History of biotechnology</span>

Biotechnology is the application of scientific and engineering principles to the processing of materials by biological agents to provide goods and services. From its inception, biotechnology has maintained a close relationship with society. Although now most often associated with the development of drugs, historically biotechnology has been principally associated with food, addressing such issues as malnutrition and famine. The history of biotechnology begins with zymotechnology, which commenced with a focus on brewing techniques for beer. By World War I, however, zymotechnology would expand to tackle larger industrial issues, and the potential of industrial fermentation gave rise to biotechnology. However, both the single-cell protein and gasohol projects failed to progress due to varying issues including public resistance, a changing economic scene, and shifts in political power.

The Institute on Biotechnology and the Human Future (IBHF) is an affiliate of the Illinois Institute of Technology (IIT) and is housed at IIT's Chicago-Kent College of Law. The IBHF was founded in 2004 by Lori Andrews, J.D., and Nigel M. de S. Cameron, Ph.D., to discuss and analyze the ethical, legal, and social implications of biotechnologies.

<span class="mw-page-title-main">Biobank</span> Repository of biological samples used for research

A biobank is a type of biorepository that stores biological samples for use in research. Biobanks have become an important resource in medical research, supporting many types of contemporary research like genomics and personalized medicine.

The Nuffield Council on Bioethics is a UK-based independent charitable body, which examines and reports on bioethical issues raised by new advances in biological and medical research. Established in 1991, the Council is funded by the Nuffield Foundation, the Medical Research Council and the Wellcome Trust. The Council has been described by the media as a 'leading ethics watchdog', which 'never shrinks from the unthinkable'.

Under article 23 of the Gene Technology Act, the Swiss Federal Ethics Committee on Non-Human Biotechnology (ECNH) is an extra-parliamentary advisory committee, appointed to advise the Federal Council and the federal and cantonal authorities on matters of regulations and enforcement of legislation in the field of non-human biotechnology. The Federal Council established the ECNH by decree on 27 April 1998. It is administratively attached to the Federal Office for the Environment in the Department of Environment, Transport, Energy and Communications.

Jeremy Gruber is a lawyer, writer, and public policy advocate and is the senior vice president at Open Primaries. He is the former President and Executive Director of the Council for Responsible Genetics. He has testified before the United States Congress on genetic privacy and discrimination issues. He was a leader of the successful effort to enact the Genetic Information Nondiscrimination Act as well as a number of state laws that preceded it and led the successful campaign to roll back a controversial student genetic testing program at the University of California, Berkeley. In 2011, Gruber led an effort to successfully enact CalGINA-a California law that extends genetic privacy and nondiscrimination protections into areas such as life, long term care, and disability insurance, mortgages, elections and other areas.

Sheldon Krimsky was a professor of Urban and Environmental Policy and Planning at Tufts University, and adjunct professor in the Department of Family Medicine and Community Health at Tufts University School of Medicine. He was a fellow of the Hastings Center, an independent bioethics research institution.

Sujatha Byravan is a biologist and journalist. She has several years of experience in the broad area of sustainable development, which is bolstered by her technical background and education in biological sciences. Her PhD and Postdoctoral work in the US were followed by a 2-year training fellowship from the Rockefeller Foundation in leadership and environment and development, work experience in India, and a leadership position as main architect and Fellows Program Director in an international environment and development organization.

On 29 March 2010, the US District Court for the Southern District of New York found several of the patent claims on the BRCA1 and BRCA2 breast cancer genes held by Myriad Genetics to be invalid. The patents were initially issued on the basis that the genes were isolated and purified to a non-naturally occurring state, however the court found, amongst other things, that the purification was not markedly different from a product of nature and thus was not patentable. The ruling may have implications for holders of other gene patents and the patentability of other naturally occurring substances. It has the potential to directly affect the operation of the healthcare and medical research industries, particularly with regards to cancer treatment and prevention, and may alter the accessibility of such therapies to patients.

<span class="mw-page-title-main">Regulation of genetic engineering</span> Overview of the regulation of genetic engineering

The regulation of genetic engineering varies widely by country. Countries such as the United States, Canada, Lebanon and Egypt use substantial equivalence as the starting point when assessing safety, while many countries such as those in the European Union, Brazil and China authorize GMO cultivation on a case-by-case basis. Many countries allow the import of GM food with authorization, but either do not allow its cultivation or have provisions for cultivation, but no GM products are yet produced. Most countries that do not allow for GMO cultivation do permit research. Most (85%) of the world's GMO crops are grown in the Americas. One of the key issues concerning regulators is whether GM products should be labeled. Labeling of GMO products in the marketplace is required in 64 countries. Labeling can be mandatory up to a threshold GM content level or voluntary. A study investigating voluntary labeling in South Africa found that 31% of products labeled as GMO-free had a GM content above 1.0%. In Canada and the USA labeling of GM food is voluntary, while in Europe all food or feed which contains greater than 0.9% of approved GMOs must be labelled.

A biological patent is a patent on an invention in the field of biology that by law allows the patent holder to exclude others from making, using, selling, or importing the protected invention for a limited period of time. The scope and reach of biological patents vary among jurisdictions, and may include biological technology and products, genetically modified organisms and genetic material. The applicability of patents to substances and processes wholly or partially natural in origin is a subject of debate.

<span class="mw-page-title-main">He Jiankui affair</span> 2018 scientific and bioethical controversy

The He Jiankui affair is a scientific and bioethical controversy concerning the use of genome editing following its first use on humans by Chinese scientist He Jiankui, who edited the genomes of human embryos in 2018. He became widely known on 26 November 2018 after he announced that he had created the first human genetically edited babies. He was listed in the Time's 100 most influential people of 2019. The affair led to ethical and legal controversies, resulting in the indictment of He and two of his collaborators, Zhang Renli and Qin Jinzhou. He eventually received widespread international condemnation.

<span class="mw-page-title-main">Vardit Ravitsky</span> Bioethicist, researcher, and author

Vardit Ravitsky is a bioethicist, researcher, and author. She is President and CEO of The Hastings Center, a full professor at the University of Montreal, and a senior lecturer on Global Health and Social Medicine at Harvard Medical School. She is immediate-past president and current vice-president of the International Association of Bioethics, and the director of Ethics and Health at the Center for Research on Ethics. She is a Fellow of the Pierre Elliott Trudeau Foundation, where she Chaired the COVID-19 Impact Committee. She is also Fellow of The Hastings Center and of the Canadian Academy of Health Sciences.

References

  1. 1 2 3 4 5 6 7 8 9 10 "Council for Responsible Genetics". Councilforresponsiblegenetics.org. Retrieved 2009-05-29.
  2. "Broadening Our Perspective". Ratical.org. Retrieved 2009-05-30.
  3. "Position Paper on Human Germ Line Manipulation Presented by Council for Responsible Genetics, Human Genetics Committee Fall, 1992". Human Gene Therapy. 4 (1): 35–37. 1993. doi:10.1089/hum.1993.4.1-35. PMID   8461382.
  4. "UC Berkeley Backs Off Gene-Test Program for Students". Bloomberg.com. 25 June 2019. Retrieved 25 June 2019.
  5. "GeneWatch". Archived from the original on 2012-09-05. Retrieved 2012-08-08.
  6. "Council for Responsible Genetics". Tufts Digital Library. Retrieved 2018-09-17.
  7. "Winner of the Utne Independent Press Award for General Excellence: Newsletters". Utne Reader. January 2007. Retrieved 2008-09-11.
  8. "Grant Search Results". Ford Foundation. Retrieved 2008-09-11.[ permanent dead link ]