Centre Of Bioethical Research & Analysis (COBRA) Resources:
Cobra Issue Guides
Genetics & Gene Therapy
Gene therapy aims to treat disease by modification at the genetic level. Scientists are becoming increasingly able to develop and test genetic therapies for a range of conditions. In this issue guide, we provide an introduction to some of the key questions. For more comprehensive discussion on this topic, please see our suggested
readings below.
Types of gene therapy
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Somatic gene therapy: affects the body cells of an individual.
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Germ-line therapy: affects the reproductive cells thereby having an impact on an individualšs children and, by implication, on the gene pool of the species.
Problem: the difference between the two types of therapy is not clear-cut, e.g. cells could be introduced into the body during somatic therapy, via a virus that could recombine with other viruses and infect the germ cells. Therefore, while germ-line therapy would change the gene pool directly, somatic therapy could have an indirect affect.
Perceived advantages of gene therapy
- Enabling people to have children where natural conception is impossible (a more effective treatment of infertility).
- The potential for discovering cures for terrible diseases - leading to less pain and suffering.
- Sex selection to prevent genetic diseases.
- Increased availability of organs for transplant.
- Increased procreative autonomy (choice over some of the genetic characteristics that one's future child will possess).
Perceived disadvantages
- Risks to the subjects of gene therapy, such as:
- Prejudicial attitudes
- Feeling that they are living in the shadow of 'originals'
- Increased competition between children
- Increased expectations of parents
- Safety concerns - the risk of detrimental genetic effects (bad biological consequences)
- Other potential harms - e.g., the perpetuation of present inequalities/ stereotypes/ power relations, both within countries and between countries, could result, especially if access to genetic technology is dependent on wealth (bad social consequences)
- Dangers associated with 'genetic reductionism' - reducing human difficulties to genetic causes and ignoring their social context (e.g. disability)
Questions:
- Where do we draw the line, if at all, between preservation of life and health or normal medical uses, and other perhaps more frivolous uses of gene therapy? (e.g. 'designer babies')
- Would it be right to base a policy on the use of genetic technology on economic incentives? (e.g. in some parts of the US you cannot obtain medical insurance if you refuse to have certain pre-natal tests)
Further considerations
- The potential irreversibility of genetic manipulation
- The questionable nature of ideas of perfection and improvement
- Perceived incompatibility with ideas of human dignity and the valuing of diversity in society
- Most technologies can be abused - that fact need not imply that we should ban those technologies
- Taking risks is not necessarily immoral and can have enormous benefits e.g., the first heart transplant
- The idea of improving the human condition, through gene therapy, can be quite compelling
Irish Context
Gene therapy research is conducted in many universities in Ireland, under strict regulation (Science Foundation Ireland provides guidelines and standards with which SFI funded researchers must comply, the various European directives on bio-science and biotechnological research must also be adhered to in addition to Irish legislation and regulation relating to research.
The Regenerative Medicine Institute (REMEDI) based in the National Centre for Biomedical Engineering Science (NCBES) in NUI Galway conducts biomedical research with a focus on integrating stem cell and gene therapy approaches to regeneration and repair of tissue. For more information on the type of gene therapy research undertaken at Remedi, please click
here.
Further reading
Singer, P., & Kuhse, H., (eds)
Bioethics, Blackwell 1999. See articles by Kaplan, Harris & Agar.
Harris, J.,
Wonderwoman and Superman, Oxford University Press, 1992.
Glover, J.,
What sort of people should there be?, Penguin, 1984.
Documentary
Stem Cells & Miracles is a short documentary giving a clear insightful overview of the fundamental processes within stem cell research and practice, while also showing how it can be used practically. It gives personal accounts, from a broad range of individuals, of how it can gene therapy can positively affect people's lives.
Mapping Stem Cell Research: Terra Incognita maps the investigation of Dr. Kessler, as he attempts to uncover some of the deeply challenging ethical questions around the issue of stem cell research. Dr. Kessler's studies were re-directed towards researching the use of embryonic stem cells after his daughter injured her spine in a skiing accident. Kessler, and his colleague, investigate the tension between religious beliefs and scientific advancements in stem cell research.