Use and storage of genetic information
- The rapid progress in the understanding of the genetic code and in the techniques of using the information contained therein imply that the ethical questions surrounding molecular genetics apply particularly to the guardianship of genetic information, from whatever source, and to the use to which such information is put, rather than to the particular process or technique which is to be applied in its use. The ability to manipulate organisms, as in the processes of “genetic engineering” of bacteria and plants, or in areas of animal and human reproduction such as “cloning” or “assisted fertilisation”, bring these wider ethical matters to the fore.
- Given that deoxyribonucleic acid (DNA) can be extracted from most bodily tissues and can be stored almost indefinitely the collection and storage of DNA, and the data extracted from it by experimentation, need special consideration. Additionally, the methods of disposal of DNA may raise cultural difficulties among some ethnic and/or religious communities. The following comments highlight a number of the consequential issues that require the specific attention of researchers:
- Since DNA is a “blueprint” it can be used for purposes other than those for which original consent was given. This is normally unacceptable and specific consent should be sought for all applications:
- With the exception of monozygotic twins, DNA is unique to an individual and cannot be made truly unidentifiable:
- Inadvertent, and often unwelcome, information may unintentionally arise from genetic research – paternity/non-paternity, unusual family relationships – and such a possibility needs to be anticipated:
- Genes and matters of heredity carry with them cultural, spiritual and emotional dimensions. These may give rise to unforeseen difficulties during research or similar investigations if researchers are not cognisant of such dimensions or choose to disregard them:
- Ethical considerations apply, at least in part, to all living species and not just to human beings.
- The arguments and debate about “genetic engineering” are often not about genetic modification per se but about whether, in any particular circumstance, the projected outcome and the consequences of any side effects are ethically and morally acceptable. In this respect there are strong similarities with environmental issues. In other words, the member involved in genetic modification for a specific purpose must always consider, in a broad context, other possible outcomes.
- Consistent with rules 12.1(1)-(3), a member must—
- follow with special care and diligence the general responsibilities outlined earlier in this Code to act honestly with integrity and professionalism; and
- follow all statutes and codes of practice which apply to the acquisition, the manipulation and the use of genetic information; and
- take particular care to secure and appropriately store all genetic information which they acquire in the course of their work; and
- note that although DNA can readily be used for purposes other than those for which consent had been given such a course is ethically unacceptable and that specific consents must be sought and obtained for each and every application of the material; and
- be aware that since “germline” gene therapy is generally regarded as being unethical because the genetic effects of such therapy are transmitted to subsequent generations, researchers contemplating any experiments of this kind must be especially careful to gain all necessary consents and to consult widely before commencement; and
- be always aware that any research into the genome of any indigenous species needs special consideration in New Zealand because of Treaty of Waitangi issues.
- Because “genetic engineering” is the current expression in the public domain signifying all aspects of genetic modification an additional statement on responsibilities is included for the guidance of those working with these techniques. This will also assure the public that the Society is aware of the need to ensure that its members act professionally and ethically in all areas of genetic research and development.
- The power to genetically modify living organisms lies alongside the power to harness the energy of the atom in placing a special responsibility on those who have the knowledge and skills to do so. It is essential that all members keep firmly in mind the general requirements of this Code of Ethics and that they do nothing that could potentially be detrimental to the community or harmful to the environment.
Operations involving genetic modification
- Consistent with rules 12.1(1)-(6), a member must—
- follow the spirit of this Code in striving to ensure that their actions have no detrimental effects on the welfare of humankind; and
- before starting their work apply for and gain all necessary approvals from appropriate Government Agencies such as the Environmental Risk Management Authority and national and local Ethics Committees; and
- undertake their activities in accordance with all legislative and institutional requirements and follow all specific codes and guidelines appropriate to their investigations; and
- keep abreast of on-going research and developments in genetic modification so that they are able, where possible, to select approaches and techniques which contribute to containment and the minimisation of residual risks; and
- acknowledge and understand that the public debate about genetic modification has a wide compass and includes ethical, moral and religious dimensions and that Maori concerns about the effect of genetic changes on belief systems, and on the possible exploitation of indigenous knowledge and indigenous flora and fauna, add a further aspect, through the Treaty of Waitangi, to the issues to be considered in New Zealand.