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Family Secrets

Jenny is a teenager facing a critical decision. Should she have DNA testing for Huntington's Disease (HD), a genetic disease that took the life of her grandmother? Why does her mother insist that Jenny get tested? Why won't her father get tested when he's started to show symptoms of HD? What are the potential consequences of this decision for Jenny and for her family? Jenny's dilemma is the basis for Family Secrets, a problem-based learning (PBL) curriculum module that focuses on the bioethical implications of genetic testing.

Family Secrets uses a progressive disclosure PBL strategy. Students work in teams to arrive at solutions ot a real-life problem presented in a five-part scenario that focuses on different stages in Jenny's life. Each part of the scenario discloses additional information that encourages students to research and discuss Jenny's dilemma from different perspectives. Students work individually and then in teams to identify the facts and questions posed by the scenarios, conduct research, and report their findings.

The Family Secrets curriculum module was developed with funding from grant R25HG002756 from the NIH National Center for Human Genome Research.

Introduction for Teachers

Information on the Family Secrets module, problem-based learning and instructional strategies.

Part 1: A Family Disease

Jenny is a teenager with a family history of Huntington's disease. Students learn about Huntington's Disease and its impact on families.

Detailed instructional guide, including student handouts

A summary of how to lead the lesson

Part 2: The Dilemma

Jenny talks with her family about genetic testing for Huntington's disease. Students learn about genetic testing - the process and its risks, benefits, and limitations.

Part 3: A Difficult Choice

Jenny talks with her father about whether she should or should not be tested for the Huntington's disease gene. Students learn about a process for making decisions involving issues that have ethical, legal, and social implications.

Part 4: Testing for the HD Gene

A simulation of the laboratory techniques used in testing family members for the Huntington's disease gene. Students learn about the molecular techniques used to test patients for the Huntington's disease gene.

  • Movie showing how DNA shows up as bands on a gel
  • Movie showing how a long and short piece of DNA move through a gel at different speeds

Part 5: Making Decisions

What happens after Jenny and her family learn the results of the DNA testing? Students discover that, even after the test results are known, there are additional ethical, legal, and social issues (ELSI) that the family must face in the future.