The Center for Bioethics & Human Dignity Trinity International University Deerfield, IL BE7700 Genetic Ethics & Prenatal Diagnosis July 17-18, 2013 1-2 Semester Hours D. Joy Riley, MD Email: Joy.Riley@tennesseecbc.org Course Description Technological advances in human genetics abound, and genetic testing is increasingly available to various individuals and populations. This course examines ethical issues arising from advances in genetics, with particular attention to prenatal and adult genetic testing, biobanking and newborn screening, and adverse diagnosis from the perspective of scientific, philosophical, and Christian theological reflections. Course Learning Objectives Demonstrate proficiency with ethical theory and Christian ethical practice, as applied to the subject of genetic testing (embryonic to adult) in class discussions, written work, and (where applicable) in a teaching presentation. Develop a rubric for an individual’s consideration of genetic testing, with attention to ethical, social, and theological issues. Required Texts If any required readings have been previously read, select equivalent length substitutes from the TGS Bioethics Reading List posted online in the Bioethics section of MyTrinity or a suitable replacement in consultation with the professor of record. 2 Ramsey, Paul. Fabricated Man: The Ethics of Genetic Control. Yale Univ Press, 1970. Skene, Loane and Janna Thompson, eds. The Sorting Society: The Ethics of Genetic Screening and Therapy. Cambridge: Cambridge University Press, 2008. Additionally please read Lederberg, Joshua. Experimental Genetics and Human Evolution. American Naturalist 100, 915 (September-October 1966): 519-531. Available from http://profiles.nlm.nih.gov/ps/access/BBABIZ.ocr; Internet; accessed 19 February 2013. Credit Hour Participants must choose one of the following choices for additional readings: Black, Edwin. War Against the Weak: Eugenics and America’s Campaign to Create a Master Race. New York: Four Walls Eight Windows, 2003. Sandel, Michael. The Case against Perfection: Ethics in the Age of Genetic Engineering. Cambridge, MA: The Belknap Press of Harvard University Press, 2007. Course Expectations Students are expected to attend every class session and actively participate in discussion. Student participation is considered vital to the goals of this course. Students are expected to complete reading assignments prior to class in order to be prepared for the material. Students will also be expected to turn in written assignments reflecting the guidelines defined in this syllabus and set forth in class and by the assigned deadlines. Failure to turn assignments in on-time will result in a grade reduction at the professor of record’s discretion. Academic Integrity: (see Academic Handbook pg 6). Learning Assignments/Required All reading (unless otherwise noted) will be completed at a level of competency which will allow the reader to interact with concepts at a critical level (note: this may require the reading of materials more than once). Reading assigned materials – prior to the first class if possible Wednesday July 17, 2013 o Mandatory only for academic credit students. o If any required readings have been previously read, select substitutes from the Suggested Reading List at the end of this syllabus in consultation with the course Professor. o Students must submit a reading report to confirm the percentage of reading completed. Written materials to be submitted at the second day of class Thursday July 18, 2013. o A brief paragraph describing the topic(s) in bioethics that the participant proposes to research for the Institute paper(s)/project (academic credit students only) and indicating which perspectives will be addressed. o After reviewing these proposals, the professor will provide guidance where needed to assist participants in refining them. An extended lunch period is provided to enable credit students to interact with professors concerning their papers. Academic credit students only – o Project – Student will design and compose an original forty-five minutes genetics ethics lecture or class for an adult audience (high school age thru adult). The presentation can cover one genetic disorder or be an overview, and requires approval by the professor of record. The presentation may be in either electronic (PowerPoint/Keynote) or digitally recorded format. Full documentation of sources must accompany the presentation. Lecture notes (or transcript) and bibliography shall be provided to the professor of record. Additional Project or Paper (2 hour academic credit students only) o Research Paper: 1. Address a genetic condition for which screening is currently available. 2. Discuss the ethical considerations of screening individuals, or one or more populations, for this condition. 3. Elucidate the impact upon the individual, the family, and society of such screening. Papers are to be 12 pages with a 10% margin (shorter or longer), double spaced, 12 pt. font, 1” margins, and use footnotes or endnotes in a consistent style. (TIU style guide, Turabian, Chicago, or SBL are acceptable formats). Papers should reference multiple sources beyond the assigned readings, consulting more primary source than secondary source materials. Research should interact with pertinent readings from the TGS Suggested Reading list (https://portal.tiu.edu/files/uportal/tgs/Reading_list_TGS-BE_7-19-11.DOC) as well as primary sources that include materials from peer-reviewed journals and monographs by prominent contributors to bioethics. Page numbers (not including the cover page or bibliography) should be BE 7700 Summer 2013 - 2 included. Additional information in guidelines are provided in the document Guidelines and Requirements for Research Papers. All mailed papers and projects must be received by August 30, 2013, together with a self-addressed stamped envelope for returning them (or else identifying a TIU campus box number on the cover page). If a student desires substantive remarks on assignments, they must turn the assignment in by August 25, 2013. Mail to: D. Joy Riley, MD 2413 Deerbourne Drive Brentwood, TN 37027 E-mail: Joy.Riley@tennesseecbc.org Assessment & Final Course Grading Papers/Projects will be graded with respect to organization, quality of composition, depth of research, and demonstrated competency with respect to the issues at hand. Errors in English grammar or spelling will result in a grade reduction. Late papers/projects or those in excess or deficient of the specified length will be evaluated more strictly, out of fairness to other students. Plagiarism will result in a failing grade. 1 Credit Hours Reading Project Paper 2 2 Credit Hours 10% 90% NA 10% 45% 45% Course Calendar Wednesday, July 17 9:00-11:30 am C. Christopher Hook, MD, and D. Joy Riley, MD, MA Genetics: Historical Overview to Present Day 1:00-2:00 pm D. Joy Riley, MD, MA - From Genes to Genomes, and Beyond 2:00-3:30 pm D. Joy Riley, MD, MA - Mandatory Newborn Screening -- from Michigan to Texas 4:00-5:30 pm D. Joy Riley, MD, MA and Joyce Shelton, PhD Case Studies in Genetics (Adult) 6:00-7:30 pm Bart Cusvellar, PhD - TBA BE 7700 Summer 2013 - 3 Thursday, July 18 2nd Annual Prenatal Genetic Diagnosis Conference Managing an Unexpected Prenatal Diagnosis: Critical Considerations for Counselors, Clinicians, and Friends Kantzer Hall 9:00 – 9:15am Welcome 9:15 – 10:15am David Prentice, PhD – Prenatal Diagnosis: An Overview of Testing Methods, Their Accuracy, Availability, and Use 10:15 – 11:15am Peter Smith, MD, MA – Drilling Down the Numbers: The Relationship between Prenatal Diagnosis and Termination 11:15 – 11:30am BREAK 11:30am – 12:30pm Mark Leach, Esq., JD – Legislation and Policy Regarding an Unexpected Prenatal Diagnosis 12:30 – 1:30pm LUNCH 1:30 – 2:30pm Byron Calhoun, MD – Research into Therapeutic Treatments for Trisomy 21 and other Genetic Intellectual Disabilities 2:30 – 2:45pm BREAK 2:45 – 3:45pm John M. Thorp, MD – Communicating an Unexpected Prenatal Diagnosis: Offering Comfort and Encouragement to Families 3:45 – 4:30pm Panel summaries and discussion 5:30 – 7:00pm Conference Opening Reception (Light dinner served) 7:00 pm Health & Human Flourishing Conference begins BE 7700 Summer 2013 - 4 Additional Suggested Readings Farmer, Ann. By Their Fruits: Eugenics, Population Control, and the Abortion Campaign. Washington, D.C.: The Catholic University of America Press, 2008. Glover, Jonathan. Choosing Children: The Ethical Dilemmas of Genetic Intervention. Oxford: Oxford University Press, 2006. Kevles, Daniel J., and Leroy Hood, eds. The Code of Codes: Scientific and Social Issues in the Human Genome Project. Cambridge, MA: Harvard University Press, 1992. Meileander, Gilbert. Neither Beast nor God: the Dignity of the Human Person. New York: Encounter Books, 2009. Presidential Commission for the Study of Bioethical Issues. Privacy and Progress in Whole Genome Sequencing. Washington, D.C., 2012. Available from http://www.bioethics.gov/cms/node/764; Internet; accessed 26 February 2013. President’s Council on Bioethics. The Changing Moral Focus of Newborn Screening: An Ethical Analysis by the President’s Council on Bioethics. Washington, D.C., 2008. Available from http://bioethics.georgetown.edu/pcbe/reports/newborn_screening/index.html; Internet; accessed 26 February 2013. BE 7700 Summer 2013 - 5 Guidelines and Requirements for Bioethics Summer Course Research Papers Have a clear research question from the start. “How” and “why” questions are important, because they naturally lend themselves to creating an argument. You must make an argument in the paper and not just recite facts or report on what you have read. The argument needs to be more than mere opinion. A general rule is that you should consult twice the amount of resources as the pages required for the paper. For example, if you are required to write a ten page paper, you should consult twenty resources. Some of this will fall into background reading, you may not end up including all of these resources in your paper. It is essential to consult resources outside the required reading for the course. Start by utilizing the suggested reading list provided for the course or the MA Bioethics list on the TIU website (https://portal.tiu.edu/files/uportal/tgs/Reading_list_TGS-BE_7-19-11.DOC). Move on to reading academic articles and journals. Do not rely on secondary sources and avoid dependence on internet sources unless they are formal reports, news items, or reputable journals. Use primary sources in your research as much as possible. Do not just read about Kant or Aristotle, read their writings directly. Find out what major research studies or seminal works have been done on your topic and access those as well. Avoid plagiarism by citing all quotes, paraphrases, and ideas that are not originally yours. Trinity’s policy on plagiarism can be found on pg. 6 of the Academic Handbook. Use footnotes or endnotes in a consistent style. TIU style guide, Turabian, Chicago, or SBL are acceptable formats. Consult a manual for whichever style you choose and again, follow that style consistently throughout the paper. Use direct quotes sparingly. Reserve the use for thoughts that you cannot say as well in your own words. Additionally any direct quotes should have an explanation unpacking them. When using a quote it is strongly preferred to use the original source where the quote appears to cite it. Shorter quotes should have double quotation marks around them. Longer quotes (50 plus words) need to be block quotes, single-space, and indented on the left margin. Follow the spacing rules for the indentation stated in the style guide you choose. Biblical citations should note which translation and be accompanied with appropriate explanation. If the citation is significant to the overall argument, pertinent biblical scholarship (ie, commentaries/such as Pillar, New International Commentaries, World Biblical Commentaries) should be consulted. The paper should be written in Times New Roman using 12 point font and double-spaced. Use 1 inch margins on the top, bottom, left, and right sides of the page. Please do not make adjustments to these guidelines. All papers need to have a cover page. It should include the title of the paper, your name, the course, and the date on which it was submitted. If you utilize a campus mailbox, please include that information to facilitate returning papers. Make sure the pages are numbered on the bottom. The first page is blank with numbering beginning on page two of the paper (the number two at the bottom). Neither the title page nor your bibliography should be numbered. Proof-read your paper and have a friend proof-read it as well. A second proofreader will pick up on things that you have missed. Let’s face it you have been staring at this paper for far too long! Do not rely solely on the spell/grammar check. BE 7700 Summer 2013 - 6