Over the years, ELSI research projects have focused on a wide range of issues including: discrimination in insurance and employment based on genetic information; when and how new genetic tests should be integrated into mainstream health care services; informed consent in genetic research protocols; and public and professional education about genetics research and bioethics.
For the past few years, the ELSI Program has been organized around the following four research areas.
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Activities in this area examine the meaning of genetic information and how to prevent its misinterpretation or misuse.
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These activities examine the impact of genetic testing on individuals, families and society and inform clinical practices related to genetic testing and counseling.
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Activities in this area focus on informed consent and other research ethics review issues related to the design, conduct, participation in, and reporting of genetics research.
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This area includes activities that provide education on genetic and ELSI issues to students, health professionals, policy makers and the general public.
Information on ELSI grants that have been funded in each of these areas since the program was initiated in 1990 can be accessed through the listing of and through the online .
In the Fall of 1998, after a year-long evaluation and planning process overseen by the , the ELSI programs at DOE and NIH identified five new goals for the ELSI Research program. The four research areas listed above will be expanded and reformulated to accomodate the issues and priorities generated by these new goals.
New ELSI Goals: 1998-2003
- Examine the issues surrounding the completion of the human DNA sequence and the study of human genetic variation.
- Examine issues raised by the integration of genetic technologies and information into health care and public health activities.
- Examine issues raised by the integration of knowledge about genomics and gene-environment interactions into nonclinical settings.
- Explore ways in which new genetic knowledge may interact with a variety of philosophical, theological, and ethical perspectives.
- Explore how socioeconomic factors, gender and concepts of race and ethnicity influence the use, understanding, and interpretation of genetic information, the utilization of genetic services, and the development of policy.
These goals will guide the research agenda for the ELSI program through the year 2003. For more information on these goals and examples of possible research questions and education activities that would be considered for funding by the ELSI program, please visit the web page.
Following the publication of the goals, ERPEG continued its analysis of the ELSI portfolio and prepared a final report summarizing the findings of this extended analysis. This report, was released in February 2000.
If you are interested in applying for a grant and would like more information on the ELSI Research Program, its goals and funding priorities and the technical and administrative guidelines for applying for an ELSI grant, see the three ELSI Program Announcements and the How to apply for an NIH grant web site referenced below.
The Human Genome Project
The Human Genome Project (HGP) is an international research effort to characterise the genomes of human and selected model organisms through complete mapping and sequencing of their DNA. This massive research project has key aims that include the development of technologies for genomic analysis, to examine the ethical, legal and social implications of human genetics research, and to train scientists who will be able to utilise the tools and resources developed through the HGP and ultimately to pursue biological studies that will improve human health.
Looking now in more detail at the actual program itself, the HGP is an international research project initially run by the Department of Energy, the National Institutes of Health and the Government in the United States, designed to construct detailed genetic and physical maps of the human genome, to determine the complete nucleotide sequence of human DNA, to localise the estimated 50,000-100,000 genes within the human genome, and to perform similar analyses on the genomes of several other organisms used extensively in research labs as model systems. The scientific products of the HGP will comprise a resource of detailed information about the structure, organisation and function of human DNA, information that constitutes the basic set of inherited “instructions” for the development and functioning of a human body. Successfully accomplishing these goals will demand the development of a variety of new technologies. It will also necessitate advanced means of making the information widely available to scientists, physicians and others in order that the results may rapidly be used for public good. It is this statement that the public are most suspicious about which gives rise to so much opposition towards the HGP.
The popular saying “Knowledge is Power” may be what the public afraid of. In theory being able to decipher the genetic code completely gives you the power to manipulate it as you see fit. This is a large fear concerning the post-HGP actions by scientists with the new abundance of information. The whole issue of genetics frightens people who just don’t understand what is going on. There is tendency for humans to avoid or fear what they don’t know or recognise. Some people on hearing the word genetics immediately associates it as some sort of weird Frankenstein project and scenarios similar to those in extravagant science fiction films run amok in their minds. Visions of clones or even armies of minions created by genetic technology coming to take over the world, almost like a Terminator reality, are not so far fetched. The end of the HGP would mark the advent of the ability to fully clone humans and this is what so many people are fighting to constrain.
So there may be the opportunity to create human clones, but what is there that can stop people doing this? Looking at the legal issues concerning genetics in this country there is actually no law in the United Kingdom to prevent or regulate human cloning by the technique known as cell nuclear replacement (CNR), which produced Dolly from the sheep. This was the upshot of a ruling in the High Court on 15 November 2001. As the law now stands, the judge's ruling implies, any scientist in Britain is free to try to produce human clones by this method, and to do whatever he likes with them if he succeeds. Even in the last couple of days there have been claims of scientists in America having already created a human embryo clone. The ‘culprits’ say, "Our intention is not to create cloned human beings, but rather to make lifesaving therapies for a wide range of human disease conditions, including diabetes, strokes, cancer, Aids, and neurodegenerative disorders such as Parkinson's and Alzheimer's disease." There are very strong arguments both for and against cloning. Those who conduct this research are not mad, but scientists seeking cures for human diseases. Those who argue against it are properly concerned with the moral status of the tissue on which the scientists are experimenting.
So it is fair to say that scientists may be using the information for the good of mankind. But what is to say that this information can or will not fall into the wrong hands? With the ability to perform ‘virgin births’ combined with a full detailed map of the human genome, anybody could create a superhuman with all the desirable traits and none of the flaws. A genetic X-MAN! People like Hitler could re-ignite hopes of a master race and mass produce clones to populate the earth, while normal humans like ourselves would be classed as ‘subhuman’ and therefore eradicated. It is also very dangerous to play around with technology like it is a toy. The slightest mistake could result in disaster. Scientists do not even have a full understanding of the human mind and trying to create a functioning human being needs this vital information otherwise there could be risks of creating potential beasts.
From a religious point of view, the whole idea of any cloning, whether it is of an animal or a human or whether it is for medical benefit or not, is frowned upon. A former US ambassador to the Vatican is quoted, "Human reproduction is now in the hands of men, when it rightfully belongs in the hands of God." Religion regards Gods as being the fathers of the planet and that genetic technology is the answer to becoming rebels and breaking away, almost as if forming an alliance with the devil and performing evil tasks.
Coming back to the issue of ‘test-tube babies’, this is a technique that has been successfully used in the past. Moral issues come into play, similar to those concerning abortion, regarding the classification of the human created. It is not right to create people for their body parts because cloning for intended destruction can easily be passed as murder in a court of law. There are arguments whether the creation is a life or not. Who owns it and is it right to put a clone through all the suffering if anything does go wrong?
So many social, ethical, moral, legal implications etc. may go so far as hindering the development of genetics into dangerous territories but in reality it can always be considered as an inevitable accident waiting to happen.