Bioethics The study of the ethical and moral implications of new biological discoveries and biomedical advances.

Bioethics Future focused (where is research going?) Legal dilemmas (patents, who owns GM?) Worst case scenarios (superweeds, loss of diversity) Right to information (e.g. employers?) public confidence (e.g. perception of risk, zoonosis) rights of developing nations (e.g. exploitation of genetic information of indigenous people)

“A moral principle in genetic testing is that it should always be done with the consent of the individual. No one wants someone snooping into his DNA” Arthur L Caplan (1999) People ask, 'Is the science going to run ahead of the ethics?' I don't think that's always the problem. I think it's that the science runs ahead of the politics. Bioethics can alert people to something coming down the road, but it doesn't mean policy and politicians are going to pay attention. “ If people think that the parts are treated like commodities, bought and sold, they may be much less willing to give. Bodies aren't the same as Coca-Cola cans Arthur L Caplan (1999) ‘’The use of foetuses as organ and tissue donors is a ticking time bomb of bioethics’’

Environmentally friendly Could improve the sustainability of crop and livestock production Could potentially benefit the health of many More predictable and directed than selective breeding Who owns and regulates the GMOs? Third world economies at risk of exploitation Biological risks have not been adequately addressed Animal ethics issues The costs of errors

Ethical Framework Rights / duties Benefit / harm Right to choose Is it “virtuous” or not. Autonomy The ability to make decisions for oneself. A person acts autonomously when such decisions can be put into effect. Duties Things each of us ought to do. For example, if you have a baby, you have the duty to look after it. A virtue is something that the community accepts as being “good” or “right”. For example, honesty is a virtue.

Right or wrong? Arguments convincingly supported by sound reasoning Arguments are conducted within a well established ethical framework A reasonable degree of consensus exists about the validity of the conclusion (genuine debate) Decision sounds right, feels right, and after talking about it, people generally agree it’s right. the discussion is the best part because it brings out the complexity of the issue and makes people aware of viewpoints they may not have otherwise considered.

Medical and Food Biotechnology http://www.biotechlearn.org.nz/biotechlearn/themes/bioethics/video_clips/the_ethics_of_medicine_and_food_biotechnology_v0162 Video Activity – Where do you stand on the position of GMO’s in Agriculture It’s a great idea.................or ...........................it should never be used!! (or somewhere in between......) Michael Reiss is a British expert on Bioethics. Students stand in a line (spectrum – extremes at either end.....discuss views for one minute......mix up line so extremes talk to each other.........discuss views for one minute. Pose question - “Should we allow GM crops to be grown in NZ?” Ask for students to work in pairs to answer this question, take responses for board so can see views.

Personal DNA testing This video segment (5min) examines the realm of personal DNA testing. It describes the latest tests, which look for single-nucleotide polymorphisms (SNPs). These single-letter differences in DNA sequence make humans unique from one another but may also predispose people to certain diseases. http://www.teachersdomain.org/asset/biot09_vid_prsnldna/

Video Activity (Groups of 3) List two or three of the ethical issues regarding the creation of DNA databases through DNA sequencing and PCR. Name some ways in which each of the following groups stand to benefit or be harmed from the sharing of an individual's DNA as well as other personal/lifestyle information: Drug companies Medical practitioners Insurers Employers The "public“

Extension Biotechnology Learning Hub | Thinking Tools http://www.biotechlearn.org.nz/biotechlearn/thinking_tools/ethics_thinking_tool

HGP Bioethics Ethical, legal, and social issues surrounding availability of HGP genetic information: Fairness in the use of genetic information Privacy and confidentiality Psychological impact and stigmatization Reproductive issues Clinical issues including the education of health service providers and the general public Uncertainties associated with gene tests Conceptual and philosophical implications Health and environmental issues concerning genetically modified foods Commercialization of products including property rights Source: http://www.ornl.gov/sci/techresources/Human_Genome/elsi/elsi.shtml

HGP Bioethics Societal concerns arising from the HGP: Fairness in the use of genetic information by insurers, employers, courts, schools, adoption agencies, and the military, among others. Who should have access to personal genetic information, and how will it be used? Privacy and confidentiality of genetic information. Who owns and controls genetic information? Psychological impact and stigmatization due to an individual's genetic differences. How does personal genetic information affect an individual and society's perceptions of that individual? How does genomic information affect members of minority communities? Source: http://www.ornl.gov/sci/techresources/Human_Genome/elsi/elsi.shtml

HGP Bioethics Societal concerns arising from the HGP: Reproductive issues including adequate informed consent for complex and potentially controversial procedures, use of genetic information in reproductive decision making, and reproductive rights. Do healthcare personnel properly counsel parents about the risks and limitations of genetic technology? How reliable and useful is fetal genetic testing? What are the larger societal issues raised by new reproductive technologies? Source: http://www.ornl.gov/sci/techresources/Human_Genome/elsi/elsi.shtml

HGP Bioethics Societal concerns arising from the HGP: Clinical issues including the education of doctors and other health service providers, patients, and the general public in genetic capabilities, scientific limitations, and social risks. Implementation of standards and quality-control measures in testing procedures. How will genetic tests be evaluated and regulated for accuracy, reliability, and utility? How do we prepare healthcare professionals for the new genetics? How do we prepare the public to make informed choices? How do we as a society balance current scientific limitations and social risk with long-term benefits? Source: http://www.ornl.gov/sci/techresources/Human_Genome/elsi/elsi.shtml

HGP Bioethics Societal concerns arising from the HGP: Uncertainties associated with gene tests for susceptibilities and complex conditions (e.g. heart disease) linked to multiple genes and gene-environment interactions. Should testing be performed when no treatment is available? Should parents have the right to have their minor children tested for adult- onset diseases? Are genetic tests reliable and interpretable by the medical community? Source: http://www.ornl.gov/sci/techresources/Human_Genome/elsi/elsi.shtml

HGP Bioethics Societal concerns arising from the HGP: Conceptual and philosophical implications regarding human responsibility, free will vs genetic determinism, and concepts of health and disease. Do people's genes make them behave in a particular way? Can people always control their behavior? What is considered acceptable diversity? Where is the line between medical treatment and enhancement? Source: http://www.ornl.gov/sci/techresources/Human_Genome/elsi/elsi.shtml

© ® HGP Bioethics Societal concerns arising from the HGP: Health and environmental issues concerning genetically modified foods (GM) and microbes. Are GM foods and other products safe to humans and the environment? How will these technologies affect developing nations' dependence on the West? Commercialization of products including property rights (patents, copyrights, and trade secrets) and accessibility of data and materials. Who owns genes and other pieces of DNA? Will patenting DNA sequences limit their accessibility and development into useful products? © ® Source: http://www.ornl.gov/sci/techresources/Human_Genome/elsi/elsi.shtml