I am finalizing a new course for this upcoming semester that is focused on personal genomics. The class aims to simultaneously address two questions:
What can personal genomic data tell us?
What do we do with that information?
The course is an upper-level seminar, and I am hoping to incorporate personal genotype testing as a pedagogical element in the course using 23andme (which is why weeks 12-14 are blank in the syllabus). What I am interested in right now, though, is feedback on my reading list, pasted below. I have limited the course to just two books–Misha Angrist’s “Here lies a human being,” and Thomas Goetz’s “The Decision Tree”–but I am going pretty heavy on additional reading ranging from news reports, blogs, anthropological and medical texts. What am I missing? What should I change?
SYLLABUS (subject to change)
Week 1: (Jan. 28-Feb. 1) Introduction
Tuesday – How does genetic knowledge alter what it means to be human?
Friday – Your genes are not your own: genetics, kinship and family history
Readings:
• Goetz, chapters 1-2 (1-49)
• Angrist, chapter 1 (1-9)
• Ashley, et al. (2010), “Clinical assessment incorporating a personal genome, ” The Lancet 375:1525-1535
• Guttmacher, et al. (2004), “The family history—more important than ever,” The New England Journal of Medicine 351(22):2333-2336
Week 2: (Feb. 4-8): Background Genetics
Tuesday – Genetics 101 and 201: How do genes shape phenotypic variability?
Friday – Genetics 301: Genes, environment and determinism
Readings:
• Goetz, chapters 3-5 (50-115)
• Buchanan, “Why does genetic determinism persist, in spite of the evidence?” – http://ecodevoevo.blogspot.com/2010/02/why-does-genetic-determinism-persist-in.html
Week 3: (Feb. 11-15): Genomics and Consent
Tuesday – The scope of genomic information
Friday – What constitutes consent?
Readings:
• Goetz, chapters 6-7 (116-168)
• Angrist, chapters 2-3 (10-53)
• Harmon, “Indian Tribe wins fight to limit research of its DNA, “NY Times 4/21/10 – http://www.nytimes.com/2010/04/22/us/22dna.html?hp=&pagewanted=all&_r=0
• Vorhaus, “The Havasupai Indians and the Challenge of Informed Consent for Genomic Research” – Genomics Law Report – http://www.genomicslawreport.com/index.php/2010/04/21/the-havasupai-indians-and-the-challenge-of-informed-consent-for-genomic-research/#more-3201
• 23andMe consent document – https://www.23andme.com/about/consent/
Week 4: (Feb. 18-22): Legal genetics
Tuesday – (NO CLASS, MONDAY SCHEDULE)
Friday – Legal issues surrounding the use and control of genetic data
Readings:
• Angrist, chapter 4 (54-77)
• Feero, et al. (2011), “Genomics, health care, and society,” The New England Journal of Medicine 365(11):1033-1041
• Wright, “Responsible and effective use of personal genomes” – Genomes Unzipped http://www.genomesunzipped.org/2011/06/responsible-and-effective-use-of-personal-genomes.php#more-3620
• Conley & Vorhaus, “Supreme court to rule on patentability of human genes” – Genomics Law Report – http://www.genomicslawreport.com/index.php/2012/11/30/supreme-court-to-rule-on-patentability-of-human-genes/#more-6923 (click through to earlier links!)
Week 5: (Feb. 25-March 1): Prediction, risk and uncertainty
Tuesday – Probability theory and hazard ratios
Friday – Pleiotropy, penetrance, polygenic traits and effect size
Readings:
• Angrist, chapters 5-8 (99-168)
• Wiszmeg, et al. (2012), “Difficult questions and ambivalent answers on genetic testing, “ Culture Unbound-Journal of Current Cultural Research 4:463-480
• Cooper & Shendure (2011), “Needles in stacks of needles: Finding disease-causal variants in a wealth of genomic data” Nature Reviews Genetics 12:628-640
Week 6: (March 4-8): Human genomics, case study #1 – Genetic ancestry
Tuesday – Who are your ancestors? Single-system ancestry estimates
Friday – Whole genome ancestry estimation and challenges
Readings:
• Angrist, chapter 9-10 (169-221)
• Plagnol, “Exaggerations and errors in the promotion of genetic ancestry testing,” Genomes Unzipped – http://www.genomesunzipped.org/2012/12/exaggerations-and-errors-in-the-promotion-of-genetic-ancestry-testing.php
• Bolnick, et al. (2007), “The science and business of genetic ancestry testing,” Science 318(5849):399-400
Week 7 (March 11-15): Human genomics, case study #2 – Huntington’s Disease
Tuesday – Genetic epidemiology of Huntington Disease
Friday – Certain diagnosis, uncertain future
Readings:
• Goetz, chapters 9-10 (191-242)
• Block & Hayden (1990), “Predictive testing for Huntington’s Disease in childhood: challenges and implications” American journal of human genetics 46(1):1-4
• Cox & McKellin (1999), “There’s this thing in our family: predictive testing and the construction of risk for Huntington Disease” Sociology of Health & Illness 21(5):622-646.
Week 8 (March 18-22): SPRING BREAK – No Class
Week 9 (March 25-29): Human genomics, case study #3 – BRCA1, BRCA2 and breast cancer
Tuesday – The functional and epidemiological role of BRCA1 and BRCA2
Friday – Preventative medical intervention
Readings:
• Ellisen, et al. (1998), “Hereditary breast cancer” Annual review of medicine 49(1):425-436
• Finkler (2004), “Illusions of controlling the future: risk and genetic inheritance,” Anthropology & Medicine 10(1):51-70.
• Schwartz, et al. (2011) “Long-term outcomes of BRCA1/BRCA2 testing: risk reduction and surveillance” Cancer 118(2):510-517
• Werner-Lin, et al. (2012) “My funky genetics: BRCA1/2 mutation carriers’ understanding of genetic inheritance and reproductive merger in the context of new reprogenetic technologies” Families, Systems & Health 30(2):166-180
Week 10 (April 1-5): Human genomics, case study #4 –ApoE, heart disease and Alzheimer’s
Tuesday, April 2 – The ApoE gene cluster and variants
Friday, April 5 – ApoE and Alzheimer’s
Readings:
• Angrist, chapters 12-13, epilogue (239-284)
• Chilibeck, et al. (2011), “Postgenomics, uncertain futures, and the familiarization of susceptibility genes,” Social Science & Medicine 72(11)1768-1775
• Lock (2006), “Living with uncertainty: The genetics of late onset Alzheimer’s Disease” General Anthropology 13(2):1-9
Week 11 (April 8-12): Personal Genomics, week 1
Tuesday – An introduction to the discussion of personal genomic data
Friday – Personal genomic project work day (no class – AAPA conference)
Readings:
• Callier (2012) “Swabbing students: should universities be allowed to facilitate educational DNA testing?” American Journal of Bioethics 12(4):32-40.
• Hughes, “It’s Time To Stop Obsessing About the Dangers of Genetic Information” Slate (1/7/2013) – http://www.slate.com/articles/health_and_science/medical_examiner/2013/01/ethics_of_genetic_information_whole_genome_sequencing_is_here_and_we_need.single.html
• Dunsworth (2012), “Your genome is showing” (video) – http://fora.tv/2012/11/29/Your_Genome_is_Showing_Human_Origins_Gets_Personal (California Academy of Sciences)
Week 12 (April 15-19): Personal Genomics, week 2
Tuesday – Topic, TBD
Friday – Topic, TBD
Readings:
• TBD
Week 13 (April 22-26): Personal Genomics, week 3
Tuesday – Topic, TBD
Friday – Topic, TBD
Readings:
• TBD
Week 14 (April 29-May3): Personal Genomics, week 4
Tuesday – Topic, TBD
Friday – Topic, TBD
Readings:
• TBD
Week 15 (May 6-10): Conclusions
Tuesday – The ethics and practice of personal genomics
Readings:
• Kolor, et al. (2012) “Public awareness and use of direct-to-consumer personal genomic tests from four state population-based surveys, and implications for clinical and public health practice.” Genetics in Medicine 14:860-867
Looks like a great class!