By Stacey Wickware

Every student in high school will undoubtedly encounter a biology class as a part of their required course of study and road to graduation. In this class, they will learn the basics about genetics in terms of where genes are found in our bodies, how genes influence our characteristics, and how babies inherit genes from their parents. But do we, as high school teachers, have a responsibility to add to the scientific instruction of theory and big concepts that encompass key terminology such as dominant and recessive genes, phenotypes and genotypes, and the rules associated with Mendelian inheritance? Specifically, should we challenge students to investigate the ethical issues associated with genetics and new technologies? At Dozier-Libbey Medical High School, the collective answer is a resounding "yes."

All students at Dozier-Libbey Medical High School, a pathway school with a health science career technical theme, take four years of health, science, and math. In addition, much of their course work in other subjects is integrated with various health themes. As freshmen, all students take biology, but this is no ordinary biology course. Students are challenged with rigorous projects that require them to put their scientific and technological knowledge to work by exploring the outcomes of genetic crosses. For example, they flip a coin to determine a series of traits for a dragon and then draw their dragon. They put their traits for some easily observable human characteristics that are coded for by only one gene on a model chromosome and then randomly combine those genes with a classmate to create a fictional child. Juniors in AP Biology perform simulations to track changes in the gene pool with various selective events. They also discuss selective breeding as a means to cause changes similar to natural section. And this is where we open up the can of worms as it applies to humans and the ethics associated with genetics.

By the time the students are seniors, they will have encountered several health themes embedded into the entire curriculum. The freshmen year involves an in depth study of "self" as students learn about nutrition, their own bodies, and of course, genetics. As sophomores, they learn what it means to be culturally competent in the health care field as they investigate the merits of both Western medicine and complementary and alternative medicine. In the junior year, students tackle medical terminology, as well as diving into the history of disease, the death and dying process, and taking part in a pregnancy and child care simulation. All of their work culminates in their senior year Medical Ethics course, the content of which serves as the hub for the integrated themes taught in their English, Physics, Government, and Economics courses. This integrated work demands that students go beyond the scientific realm of their genetics knowledge and challenges them to use that knowledge in several ethical decision making projects.

The essential question that drives the Medical Ethics course is one that relates to what it means to be "fit" in society and what happens when members of that society determine that a particular group is "unfit" for membership. As such, one of the first units involves medical ethics abuses and focuses on the eugenics movement. Here, students investigate issues surrounding eugenic control of reproduction, forced sterilization of the feebleminded or incarcerated, and unethical medical research on those thought to be "unfit." At every opportunity, students are asked to utilize their scientific knowledge of genetics and relate it to the ethical issues we are uncovering in an attempt to answer our essential question.

Successive units require students to challenge themselves by identifying ethical considerations as they relate to fairness, justice, respect for persons, potential harms, and possible benefits. This is largely done by researching case studies and being on constant watch for information in the media that relates to the case study topic and bioethics in general. In one unit in particular covering genetics and new technologies, students ponder who has control of our bodies. They research and discuss current and continuing issues, such as the stem cell debate, by deconstructing the documentary Lines that Divide. The film deals with such issues as miracle cures for diseases, harvesting select human life to save others, moral arguments over the utilization of embryos, and the possibilities of cloning. They also evaluate the documentary Cracking Your Genetic Code dealing with issues of protection and privacy of genetic data, ensuring effective public education about promises and limitations of personalized medicine, and the burden of knowing your own genetic information. Students also learn about the dangers associated with gene therapy by studying the death of Jesse Gelsinger, the 17 year old teenager who in 1999 lost his life as a result of the experimental gene therapy he received for an inherited disorder (ornithine transcarbamylase deficiency or OTC). As a summative assignment, students engage in the research process after having read The Immortal Life of Henrietta Lacks in their English class. This research essay offers the students their choice of several prompts, the content of which are all related to the ethical issues they have been learning in their Genetics and New Technology unit. Prompts include the subject of direct to consumer genetic testing and the issues of privacy, genetic discrimination, and a possible shift toward a "new eugenics." Another prompt is related to privacy and contact tracing of donors of eggs or sperm.

Perhaps one of the most engaging units in the Medical Ethics course is a 5-week long integrated project titled Project EDDIE, which stands for "Envision, Discover, Design, Invent, and Execute." This might seem like a reach for the study of genetics, but when you consider that students are being asked who and/or what we are trying to "fix" and what it means to be "normal," you can begin to see how the students' knowledge of genetics will surely be challenged. This unit involves an in depth study of human enhancement and disability studies. Students explore disability, ableism, eugenics and transhumanism in the context of emerging human enhancement technologies. The unit's essential question - "What does it mean to design better humans and do we want to?" - is looked at by focusing on the underlying questions related to what it means to be disabled, the meaning of normal, and who should determine what kind of people get to be born. At the heart of the project is the physics component where students actually invent a product for a person with a disability, designed to help that person continue an activity they are passionate about. In preparation for this, students screen the documentary Emmanuel's Gift to investigate the American narrative surrounding how the disabled in third world countries are portrayed, as well as participate in discussions that highlight the disability rights movement, government and citizen responsibility, and the examination of cultural values that in some ways become embedded in assistive technology. Case studies, articles related to reproductive rights, cultural understandings of "the body," and texts like George Estreich's The Shape of the Eye relating to children with Down's Syndrome, are used to help students evaluate the impact of new technology on humans.

Clearly, the staff at Dozier-Libbey Medical High School feels that high school age students are just the right group of people to expose to the ethical issues associated with the science of genetics. To be sure, high school graduates are charged with entering college with a skill set that includes being able to articulate their opinions, make difficult decisions, and be able to justify those decisions using scientific facts but also ethical considerations. What we are doing at Dozier-Libbey is giving students the necessary tools for their college and career toolbox, but more importantly, we are equipping them with the knowledge they will need in order to become productive citizens who will eventually be able to make informed decisions and in some cases, vote on legislation directly impacting their lives. Teenagers are precisely the right age for asking multitudes of questions. They naturally want to know "why." Even if we do not have them in high school long enough to teach genetics curriculum at an in depth level to answer those questions as they do in college, we are certain they will be prepared and more interested when they do encounter these teachings. So, should we challenge high school students by having them engage in both scientific and ethics related curriculum? You bet.


Stacey Wickware teaches Medical Ethics and AP United States History at Dozier Libbey Medical High School in Antioch, California.

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