“If you use one of your children to save the life of another, are you being a good mother or a very bad one?”
Sara Fitzgerald, Anna’s mother in Jodi Picoult’s ‘My Sister’s Keeper’.
Facts for Life act as facilitators for six bioethics modules, which can be run as independent sessions or consecutively as a full-day workshop. The focus throughout is to consider and discuss the ethics of modern bioscience and the impact it has on our lives. The sessions use current headlines and case studies coupled with hands-on activities to explain, investigate and debate modern genetic concepts and evaluate the associated costs and benefits. Students are encouraged to express their opinions, share personal stories and consider the attitudes and opinions of others in a supportive and encouraging environment.
DNA DATABASES – WHOSE DNA IS IT ANYWAY?
Many organisations analyse people’s DNA and store the information on a database. The National DNA database has proved invaluable in the fight against crime, enabling the police to use DNA ‘profiles’ to provide irrefutable evidence in criminal cases. Research scientists use genetic databases to identify genes key to the onset of diseases. Pharmaceutical companies are investing heavily in ‘personalised healthcare’, where a drug is developed to target a specific genetic subset of disease sufferers. There are also personal genomics companies, who make money from analysing the DNA from people who are interested in their ancestry, or what diseases they might develop in the future.
Using case studies we explore the moral principles of each of these four database categories and discuss the ethics of storing and sharing our genetic information. We discuss striking a balance between using DNA databases to benefit mankind and the invasion of an individual’s privacy. Finally we debate who, if anyone, owns our DNA, and decide who we would trust with our genetic information.
Would you be interested in tracing your ancestry? Would you want to find out what diseases you might develop later in life? Would you want to test your unborn baby for genetic diseases? Would you pay to find out this information? How much? And what would you do with the information once you had it?
In this module we define genetic testing, screening and profiling before splitting into groups of ‘experts’ to discuss understanding and opinions on current headlines. We investigate genetic disorders and consider statements and situations concerning the social and ethical issues surrounding genetic testing.
We introduce the concept of Preimplantation Genetic Diagnosis (PGD), where IVF embryos are genetically profiled for a specific genetic disease prior to implantation. This enables people with a familial inherited condition to avoid passing it on to their children. In the UK, the Human Fertilization and Embryology Authority prohibits sex selection for social or cultural reasons, but allows it to avoid sex-linked disorders.
We explore the rationale of this legislation and, in light of increasing acceptability of PGD, we discuss how much longer the law will legitimately be able to prevent the selection of other genetic characteristics. We use case studies and current headlines to discuss the ethics of using technology to select the genes that a baby will carry, and students have the opportunity to raise and discuss concerns over what this may lead to in the future.
What is a saviour sibling? How would I feel if I was a saviour sibling? How would I feel if my brother or sister was born to save my life?
This session follows on from the Designer Babies module and explores the application of PGD to create a child who is born to provide an organ or cell transplant to an older sibling who is suffering from a serious medical condition. We use real-life case studies to debate the key ethical arguments for and against saviour siblings, including the welfare of the donor child. We explore UK legislation, and we discuss and ‘vote’ whether hypothetical requests for a saviour sibling should be granted or denied.
Gene therapy, when a corrected copy of a defective gene is introduced into a patient, is a promising treatment for some genetic diseases. To date, scientists have focussed on treating individuals, but controversial research has pioneered germline gene therapy, which targets egg or sperm cells to allow the inserted gene to be inherited by future generations.
In this module we compare the scientific basis of gene therapy to traditional drug-based approaches, and we discuss the challenges and risks of introducing foreign DNA to our cells. Students are divided into groups to consider the ethical concerns around altering DNA, the blueprint of life – what diseases are acceptable targets for gene therapy? What traits are normal and what constitute a disability or disorder? Should we be allowed to use gene therapy to enhance basic human traits such as height, intelligence or athletic ability? And do we have the right to alter the DNA of an unborn child?
In 2015, the UK was the first country in the world to legalise mitochondrial donation, an IVF technique that replaces a small amount of faulty DNA in a mother’s egg with healthy DNA from a second woman. This prevents a number of maternal-linked genetic diseases from being passed onto children. However, the treatment results in offspring with three genetic parents, and the DNA from all three parents is passed on to subsequent generations.
There are a number of objections, both ethical and religious, to this technique, and we draw on these objections to discuss the implications for the future, and to debate whether the UK was right to change the law to permit the creation of ‘three parent’ babies.