Genetics & Ethics

1. Genetics & Ethics Philosophy 2803 Lecture X April 9, 2002

2. Introduction • Tonight’s class will sketch some ethical issues raised by genetics • Focus will be on genetic testing since this is currently available • There are many other ways in which genetics raises ethical issues, e.g., genetic engineering, gene therapy

3. Three Main Reasons Why Genetics is Ethically Interesting 1. Genetic information often identifies risks of medical conditions that don’t yet affect the patient • The ‘at risk’ patient 2. Genetic information is about families as well as individuals • As such, it sometimes doesn’t fit well into our usual individualistic ways of thinking about consent, confidentiality, etc. 3. Genetic research is commercially driven to a very substantial degree • This raises questions about whether it is legitimate to allow genes to be ‘owned’ and what people should expect in return for participating in genetic research

4. Case Study: Huntington’s Disease • A disease which causes deterioration of nerve cells in the brain • Slowly destroys the affected individual's ability to walk, think, swallow, talk, … • Normally begins affecting people when they are between 30 and 50 years old • Death (due to pneumonia, heart failure or other complications) usually occurs between 10 and 25 years after symptoms first appear

5. Genetics for Philosophers • Our chromosomes (which contain our genes) come in pairs. • We inherit one chromosome from each pair from each of our parents • The paired chromosomes, while similar, are not identical • About 1 in 10,000 people are thought to carry a mutation linked to Huntington’s Disease

6. Inheriting Huntington’s • Huntington’s is an example of a dominant genetic condition • i.e., you only need to inherit one copy of a gene for Huntington’s in order to be almost certain to contract the condition at some point • If one of your parents carries a mutation linked to Huntington’s, you have a 50% chance of having inherited such a gene yourself.

7. Testing for Huntington’s • Huntington’s is caused by having an enlarged gene on chromosome 4 • Since the early 90’s a very reliable genetic test for such an enlargement has existed • Even if you presently show no signs of Huntington’s, it can tell you with great reliability whether you carry a gene that makes it extraordinarily likely that you will develop Huntington’s. • There is no cure

8. Groupwork • 1. If you carry a gene linked to Huntington’s, any children you have will be at a 50% risk of carrying the same gene • Some, including Purdy (pp. 490-499), suggest this may make it immoral for you to attempt to have children • Is this correct? • 2. Suppose you knew that Huntington’s was in your family. Would you want to be tested for it?

9. Assessing Purdy’s Argument • “if it is true that sufferers [from Huntington’s] live substantially worse lives than do normal persons, those who might transmit it should not have children.” (496) • Response: this is a pretty big ‘if’ • It seems to require making judgments about what sort of live is worth living that are deeply troubling • Nonetheless, thinking about this issue should allow you to appreciate why genetics raises some distinct ethical questions.

10. Some Issues Raised by Genetic Testing • Risks of being tested • Problems posed by public conceptions of genetics • Problems with confidentiality & consent • ‘Commodifying’ our genes

11. 1. Risks of Being Tested • Psychological • If positive for a ‘bad’ mutation: • Burden of knowing you have the predisposition, particularly if no treatment is available • Genetic determinism: possible overestimation of likelihood of actually becoming afflicted • The situation with Huntington’s is not typical • If negative: • Evidence of ‘survivor guilt’ in some cases • Possible over-confidence • E.g., thinking you won’t get breast cancer because your test for BRCA1 & 2 came out OK

12. More Risks of Being Tested • Practical • Employment • Life insurance • Health Insurance (more important in US) • Is it fair for companies to take genetic information into account when making hiring decisions or decisions about whether to insure a person? • Do these risks justify being paternalistic regarding who is given a genetic test, as DeGrazia suggests (pp. 474-490)? • ‘Traditionally,’ tests have not been given without genetic counselling, although this is likely to change. • Recall the Rule of Justified Paternalism

13. 2. Popular Beliefs about Genetics • Genetic Determinism: The common misconception that all genes work like the gene for Huntington’s, i.e., the idea that having a particular gene will guarantee having a particular trait • Huntington’s is an atypical example • For the most part, having a particular gene mutation will just increase your chance of developing some trait, not guarantee it. • Furthermore, most ‘genetic conditions’ are the result of a number of different gene mutations (as well as interactions with the environment) • We are unlikely to discover ‘the gene makes you good at math’

14. 3. Confidentiality & Consent • In medical ethics, a great deal of importance is placed on the idea of individual informed consent • One aspect of this is that your personal health information is not supposed to be released without your consent • But the nature of genetic information sometimes gets in the way of this • Finding out genetic information about you also reveals genetic information about the people you’re related to

15. Case: Confidentiality & Huntington’s • Suppose there is a known history of Huntington’s in your family, but you don’t want to know whether you personally carry a mutation for Huntington’s. • Your son does, however. He gets tested and discovers that he has a mutation for Huntington’s. • This almost guarantees that you also carry such a mutation. • We have discovered personal information about you without your consent • How should we deal with this? • Should we put restrictions on who your son can reveal this information to?

16. Confidentiality & Duty to Warn • Most ethicists agree that, while confidentiality is important, there are situations in which confidentiality can be broken • The most common example involves a duty to warn • E.g., a psychiatrist who is told by one of his patients that the patient plans to kill his wife tomorrow • Is there a genetic duty to warn? • Must we warn family members who are at risk? • Should we warn employers if a person possesses a genetic mutation that may someday pose a threat? • E.g., the bus driver at high genetic risk of heart failure

17. Case Study: BRCA 1 & 2 • About 5-10% of breast cancer is thought to be hereditary • It has been discovered that those women with particular mutations in the BRCA 1 or 2 gene are at an elevated risk of contracting breast cancer • Without these mutations: 2% by age 50, 7% by age 70 • With the mutations: 33-50% by age 50, 56-87% by age 70 • Note: information is from Myriad Genetics’ website

18. Myriad Genetics & BRCA • Myriad Genetics (Utah, USA) holds patents on BRCA 1 & 2 • They have recently been insisting that only they (or companies they have a licensing agreement with) may perform testing for the BRCA 1 & 2 mutations. • The government of Ontario has refused to obey, preferring to perform its own test, which it claims is both cheaper and more accurate

19. 4. Commodifying Genes • The Myriad example raises a number of questions regarding the commercialization of genetic research • Is gene patenting ethically acceptable? • If our genes are a valuable commercial resource, should we be paid for them? • Are genes property or person?

20. Newfoundland & Labrador • Questions about commercial research are particularly relevant in Newfoundland and Labrador • Most of the present population of the province can trace their ancestry back to settlers in the 1800s or earlier • Some argue that Newfoundland has a ‘homogeneous’ gene pool that is very valuable for genetic research • We have an elevated rate of some genetically influenced conditions (e.g., psoriasis) • For these reasons, Newfoundland had been described as "something of a motherlode to the drug development industry" (National Post, 2000).

21. Should You Be Paid for Your DNA? • There has been some local debate about whether individuals should be paid for providing their DNA to researchers • One former professor at MUN suggested $50,000 (US) per donation

22. A Recent Report • Policy Implications of Commercial Human Genetic Research in Newfoundland and Labrador • Pullman & Latus, 2003 • Argues that human DNA should be viewed as neither property nor person, but something in between • Payments may sometimes be OK, but not individual ones. • In keeping with our general approach to health care as a public good, payment should go to improve health care & research • Gene patenting should be reconsidered • This by no means settles the issue

23. So what was the point of all this? • Genetics provides a good final example for this course • New developments in health care almost invariably raises new ethical problems • New developments often cast old problems in new light • Health ethics will never run out of problems

24. But … • ‘All you’ve done is raise questions and problems. What was the point of that?’ • Answer #1: Sometimes these problems don’t have clear solutions. • Sometimes making people sensitive to problems is the best solution we can hope for • E.g., while we may not be able to stop a genetic test on Mary’s son from revealing information about Mary, but by being aware we can at least try to minimize this problem • Answer #2: Ethics is hard • Progress does occur, but it’s very slow because these are difficult problems. • The least we can do is subject these issues to a serious public debate.