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Ethical, Legal and Social Implications (ELSI) of Genetic Knowledge includes a short multimedia video introducing current and future societal issues associated with genetics and genomics. [46] |
The planners of the Human Genome Project (HGP) recognized that the information gained from mapping and sequencing the human genome would have profound implications for individuals, families and society. While this information would have the potential to dramatically improve human health, they also realized that it would raise a number of complex ethical, legal and social issues. How should this new genetic information be interpreted and used? Who should have access to it? How can people be protected from the harm that might result from its improper disclosure or use?[47]
The Ethical, Legal, and Social Implications (ELSI) program was founded in 1990 as an integral part of the Human Genome Project. The mission of the ELSI program was to identify and address issues raised by genomic research that would affect individuals, families, and society.[48]
The
U.S. Department of Energy (DOE) and the National Institutes of Health (NIH)
have devoted 3% to 5% of their annual Human Genome Program budgets toward
studying the ethical, legal, and social issues (ELSI) surrounding availability
of genetic information. This represents the world's largest bioethics program
and has become a model for ELSI programs around the world.[49] In
1997, the ELSI project received 11 million dollars of the Human genome budget,
to study the implications of the Human Genome Project.[50]
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The ELSI program focused on the
possible consequences of genomic research in four main areas:
>> Privacy and fairness in the use of genetic information, including the potential for genetic discrimination in employment and insurance.
>> The integration of new genetic technologies, such as genetic testing, into the practice of clinical medicine.
>> Ethical issues surrounding the design and conduct of genetic research with people, including the process of informed consent.
>> The education of healthcare professionals, policy makers, students, and the public about genetics and the complex issues that result from genomic research.[51]
>> Privacy and fairness in the use of genetic information, including the potential for genetic discrimination in employment and insurance.
>> The integration of new genetic technologies, such as genetic testing, into the practice of clinical medicine.
>> Ethical issues surrounding the design and conduct of genetic research with people, including the process of informed consent.
>> The education of healthcare professionals, policy makers, students, and the public about genetics and the complex issues that result from genomic research.[51]
Five goals of ELSI were outlined by Francis Collins in the October 23, 1998 issue of Science:
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The
pyramid below depicts the Ethical, Legal, and Social Implications (ELSI)
Research Program goals for 1998-2003.
The first goal, at the top of the pyramid, deals with the issues around the completion of the first human DNA sequence and the study of human genetic variation, making concrete the vision that the advances in genome science will be an important factor contributing to the ELSI research agenda.
The first goal, at the top of the pyramid, deals with the issues around the completion of the first human DNA sequence and the study of human genetic variation, making concrete the vision that the advances in genome science will be an important factor contributing to the ELSI research agenda.
The second and
third goals focus on the integration of the information generated by these new
discoveries into clinical, non clinical, and research settings. The fourth goal
examines the interaction of this information with philosophical, theological,
and ethical perspectives. Finally, providing the foundation for all of these
explorations is the fifth goal, examining how the understanding and use of
genetic information are affected by socioeconomic factors and concepts of race
and ethnicity.[49]
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Ethical issues need to be considered if the benefits are
maximised and the harms minimised from the increasing ability to use genetic
testing to analyse an individual's genetic information.
Now we will take a look at the ethical issues experienced in the application of human genetics Technologies:-
1. The shared
nature and ownership of genetic information
The doctor’s ethical responsibilities include balancing the privacy and confidentiality of the individual and prevention of harm to others (the duty of care). The individual tested also has family responsibilities and obligations including dissemination of genetic test results within the family to enable informed decision-making by their at-risk relatives.
2. Limitations of genetic testing
While in some cases, genetic tests provide reliable and accurate information on which people can make decisions, in other cases it may not be possible to obtain a definitive result. An individual is much more than the sum of their genes: the individual's environment can modify the expression of genetic messages to the body and many factors are not genetic that make an individual who they are. The discovery of a change in a particular gene may provide some information about the nature of the condition that the person has, will develop or for which they may be at increased risk, but can rarely predict the severity of the condition or the age at which symptoms will first onset and in prenatal testing, the potential for quality of life for the child or the severity of a particular condition.
3. Inappropriate applications of genetic testing such as for the sole purpose of family balancing (sexing of a fetus for this reason) or its use in paternity testing without the informed consent of all parties involved.
4. The potential for discrimination especially with the use of information generated by the use of predictive/presymptomatic testing results - generally for adult-onset conditions - in life insurance applications and employment.
5. Setting boundaries in applications of the genetics technology:This is one of the greatest challenges to find the way to implement regulations internationally such as in the areas of reproductive cloning and genetic testing for enhancement. It is also important to recognise and respect the moral, religious and cultural beliefs that underpin the decision-making by individuals, couples, families or communities.
6. Forensic DNA databanks:Ensuring that they are used for the purpose for which they were collected and protected from misuse. Also, where the public has also assisted the police by volunteering genetic samples to assist in the investigations of unsolved crimes, ensure that special protections are put in place for the DNA samples and the information generated.
7. Patenting of genes: Ensuring that commercial interests do not limit equity and access.[53]
The doctor’s ethical responsibilities include balancing the privacy and confidentiality of the individual and prevention of harm to others (the duty of care). The individual tested also has family responsibilities and obligations including dissemination of genetic test results within the family to enable informed decision-making by their at-risk relatives.
2. Limitations of genetic testing
While in some cases, genetic tests provide reliable and accurate information on which people can make decisions, in other cases it may not be possible to obtain a definitive result. An individual is much more than the sum of their genes: the individual's environment can modify the expression of genetic messages to the body and many factors are not genetic that make an individual who they are. The discovery of a change in a particular gene may provide some information about the nature of the condition that the person has, will develop or for which they may be at increased risk, but can rarely predict the severity of the condition or the age at which symptoms will first onset and in prenatal testing, the potential for quality of life for the child or the severity of a particular condition.
3. Inappropriate applications of genetic testing such as for the sole purpose of family balancing (sexing of a fetus for this reason) or its use in paternity testing without the informed consent of all parties involved.
4. The potential for discrimination especially with the use of information generated by the use of predictive/presymptomatic testing results - generally for adult-onset conditions - in life insurance applications and employment.
5. Setting boundaries in applications of the genetics technology:This is one of the greatest challenges to find the way to implement regulations internationally such as in the areas of reproductive cloning and genetic testing for enhancement. It is also important to recognise and respect the moral, religious and cultural beliefs that underpin the decision-making by individuals, couples, families or communities.
6. Forensic DNA databanks:Ensuring that they are used for the purpose for which they were collected and protected from misuse. Also, where the public has also assisted the police by volunteering genetic samples to assist in the investigations of unsolved crimes, ensure that special protections are put in place for the DNA samples and the information generated.
7. Patenting of genes: Ensuring that commercial interests do not limit equity and access.[53]