Bioethics in Daily Life

1. Bioethics in Daily Life Day 4 ANT 4930 Prof. Connie J. Mulligan Department of Anthropology

2. Group presentations • Should be a product of contributions of all group members • Not one member’s idea and other members look for information to support that idea • Should be something different than any one member could have created • Must have clear scientific content • Should be able to point to scientific content • Should have numbers, table, reference, etc not just a scientific idea of the group • This week, email me your group’s idea(s) by Friday so I can have some input.

3. Black? White? Asian? More young Americans choose all of the above • http://www.nytimes.com/2011/01/30/us/30mixed.html?src=me&ref=general • College students today include the largest group of mixed-race people ever to come of age in the United States • One in seven new marriages is between spouses of different races or ethnicities • “It depends on the day, and it depends on the options.” • “If someone tries to call me black I say, ‘yes — and white.’” • “All society is trying to tear you apart and make you pick a side.”

4. This week – Genetic screening II/ Genetic enhancement • Eugenics • Designer babies • Required reading (also listed on course webpage, Day 3) • Bioethics at the Movies (BAM) • Chpt 5 (“No Gene for Fate?”: Luck, Harm, and Justice in Gattaca) • Chpt 6 (Lifting the Genetic Veil of Ignorance: Is there anything really unjust about Gattacan society?) • http://www.scientificamerican.com/article.cfm?id=regulate-designer-babies – Scientific American article on the need to regulate ‘designer babies’ • http://en.wikipedia.org/wiki/Eugenics - Wikipedia entry on eugenics • Video – GATTACA • Four oral presentations

5. Next week – Genetic screening III/Gene therapy • Gene therapy methods • Gene therapy to cure disease • Gene therapy case study at UF • Gene therapy/genetic engineering in non-pathological cases, i.e. genetic enhancement • Required reading (also listed on course webpage, Day 4) • http://ghr.nlm.nih.gov/handbook/therapy/ethics - very short article on gene therapy • http://www.cancer.gov/cancertopics/factsheet/Therapy/gene - National Cancer Institute website on gene therapy for cancer • http://www.ornl.gov/sci/techresources/Human_Genome/publicat/genechoice/7_dr.htm - case study of genetic engineering/eugenics • http://www.research.ufl.edu/publications/explore/current/story_2/ - UF’s Explore article on UF’s Barry Byrne’s research on Pompe disease and how it was made into a movie • Video – Extraordinary Measures • Four oral presentations

6. Day 4 • Eugenics • Designer babies • Pushing genetic technologies to create superior ‘enhanced’ human beings

7. Design your baby • Choose your baby’s hair, eye and skin color • Who would be interested?

8. Today, people are more interested in designing a single individual than engineering an entire group of people, like eugenics, i.e. “the biosocial movement which advocates the use of practices aimed at improving the genetic composition of a population” (Wikipedia) • More of a ‘personal service model’ (Buchanan et al. 2000), driven by a capitalistic society where services with a demand are provided to those who can afford them, i.e. no state-controlled program of eugenics, although the services can become so widely used that they change the genetic composition of a population

9. Should we have a Gattacan society? • Book argues this point from a strictly ethical perspective • First, we need to look at the science • Not just whether it’s feasible, but what a Gattacan society would look like once the technology is available • Because it’s science fiction, there is a tendency to allow anything. But Gattacan society is close enough to reality that we can predict what would and would not be possible in a Gattacan society. That is where the argument should take place.

10. Can we engineer an enhanced human?

11. Can we engineer an enhanced human? • No, but we can select fertilized embryos with certain genetic characteristics • Genotype at the pre-implantation stage and implant the embryo with the desired genotype

12. How accurately can we predict phenotype from genotype? • GATTACA Vincent’s prognosis • Neurological condition – 60% probability • Manic depression – 42% probability • Attention deficit disorder – 89% probability • Heart disorder – 99% probability • Early fatal potential, life expectancy – 30.2 years • Is this feasible or reasonable?

13. How accurately can we predict phenotype from genotype? • GATTACA Vincent’s prognosis • Neurological condition – 60% probability • Manic depression – 42% probability • Attention deficit disorder – 89% probability • Heart disorder – 99% probability • Early fatal potential, life expectancy – 30.2 years • Is this feasible or reasonable? • It’s very hard to predict the probability of complex phenotypes

14. Inheritance of monogenic and complex phenotypes/disorders

15. This kind of certainty would be very difficult, if not impossible, for a complex phenotype • Neurological condition – 60% probability • Manic depression – 42% probability • Attention deficit disorder – 89% probability • Heart disorder – 99% probability • Early fatal potential, life expectancy – 30.2 years • More likely – ‘XXX has two alleles that increase his probability of heart disease approximately 5-10% relative to the general population, not counting other unidentified and untested genes/alleles or environmental effects

16. What about linked traits? • We can’t predict with certainty the probability of tested traits • What about other traits whose genes are ‘linked’ to the genes we’re testing and selecting • What is this phenomenon called?

17. Linkage disequilibrium

18. Use of linked genetic markers, i.e. linkage disequilibrium, to test for presence of “disease gene” or any trait of interest Genetics, Hartl and Jones, 2000

19. What is linkage disequilibrium (LD)? • The tendency of particular alleles at distinct loci to be co-inherited • Also called gametic association • Commonly thought of as ‘linked genes’ • Markers that are physically close on the chromosome are more likely to be inherited together, i.e. are in strong LD • Markers that are more distant from each other are in weaker LD – why?

20. What is linkage disequilibrium (LD)? • The tendency of particular alleles at distinct loci to be co-inherited • Also called gametic association • Commonly thought of as ‘linked genes’ • Markers that are physically close on the chromosome are more likely to be inherited together, i.e. are in strong LD • Markers that are more distant from each other are in weaker LD – why? • Because there is a greater chance of recombination breaking up those markers

21. LD around an ancestral mutation • Markers close to the ancestral mutation tend to remain associated with it despite the passage of time and recombination events • Recombination hotspots can change this relationship, i.e. close markers can be out of LD and far markers can remain in LD Jobling et al. 2004, Fig 3.27

22. What does LD mean in terms of genetic enhancement?

23. What does LD mean in terms of genetic enhancement? • If genetic markers, and genes, are in LD and are more likely to be co-inherited, that means you are selecting for more than just one the gene/allele you have tested • For example, by choosing blue eyes, and selecting against brown eyes, you may also select against a gene involved in intelligence. You may also select a gene associated with violence.

24. What does LD mean in terms of genetic enhancement? • Many complex disorders have a spectrum of symptoms, some of which can be highly adaptive • Autism • Asberger syndrome/high-functioning autistics/Bill Gates?

25. How to read a journal article

26. Parts of an article – some of this information is very field-specific and may not be true outside Bioanthropology • What is an abstract? • What information goes into an Intro? • What information goes into Results? • What information goes into Disc?

27. Parts of an article • What is an abstract? • A summary of points presented in skeletal form • Opportunity for authors to specify what they think are the most important points • What information goes into an Intro? • What information goes into Results? • What information goes into Disc?

28. Parts of an article • What is an abstract? • What information goes into an Intro? • Background info • Foreshadows Discussion • All Intro material should be followed up later in article • What information goes into Results? • What information goes into Disc?

29. Parts of an article • What is an abstract? • What information goes into an Intro? • What information goes into Results? • Just Results • No interpretation, no discussion • What information goes into Disc?

30. Parts of an article • What is an abstract? • What information goes into an Intro? • What information goes into Results? • What information goes into Disc? • Interpretation and significance of results • Opportunity for authors to focus on what they think is most important about their results • Should pick up on info in Intro • Can be very dependent on what topics are currently ‘hot’ so Discussion can become outdated even if Results are still relevant

31. How to read a journal article • Note year of publication • Anything more than 5 yrs old is fairly old in my field • Note authors • Have you read anything else by this lab? • Author et al. Year is the best way to refer to a paper • Refer to articles this way in Questions/Comments, Journal Analysis, exam, etc • General strategy for an article outside of your field • Read Abstract, then Intro and then Disc • M&M is usually too complicated unless you want a specific piece of info • Results is generally pretty cut and dried • Re-read abstract after you read paper • See what authors presented as the take-home message

32. Discussion questions • How realistic is Gattacan society?

33. Discussion questions • How realistic is Gattacan society? • Are children whose genes have been chosen by their parents likely to have unique emotional burdens?

34. Discussion questions • How realistic is Gattacan society? • Are children whose genes have been chosen by their parents likely to have unique emotional burdens? • Is the argument at the level of the individual (any individual had no alternative but to not be born) or at the level of society?

35. Discussion questions • How realistic is Gattacan society? • Are children whose genes have been chosen by their parents likely to have unique emotional burdens? • Is the argument at the level of the individual (any individual had no alternative but to not be born) or at the level of society? • Is Gattacan society unfair? Is it more unfair that society today?

36. Discussion questions • How realistic is Gattacan society? • Are children whose genes have been chosen by their parents likely to have unique emotional burdens? • Is the argument at the level of the individual (any individual had no alternative but to not be born) or at the level of society? • Is Gattacan society unfair? Is it more unfair that society today? • How much can we transcend our genes? Will people work harder to overcome a deficit and will we select against that determination if no one has a deficit?

37. Discussion questions • How realistic is Gattacan society? • Are children whose genes have been chosen by their parents likely to have unique emotional burdens? • Is the argument at the level of the individual (any individual had no alternative but to not be born) or at the level of society? • Is Gattacan society unfair? Is it more unfair that society today? • How much can we transcend our genes? Will people work harder to overcome a deficit and will we select against that determination if no one has a deficit? • Is it OK to allow genetic enhancement, but make strict genetic privacy laws (ignorance veil – Chpt 6) so there is no discrimination based on a simple read of one’s genome?