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There are additional questions to consider in the Random House Teacher's Guide in the sections, Writing Prompts and Topics for Further Discussion.
How do we as a society weigh and balance the long-term benefits with the social risks of genetic research? Who should have access to personal genetic information and how will it be used in the future?
Who owns and controls your genes and genetic information? Can identity be protected "forever"?
Use of genetic information in reproductive decision making and reproductive rights: what are the larger societal issues raised by new reproductive technologies?
Does patenting DNA sequences encourage or hinder the development of testing and treatments?
Informed consent and
the purpose of medicine:
Issues regarding medical treatment and technical developments – who should benefit from scientific research? Do the incredible benefits and progress made in health care that result from taking tissue samples justify the removal of them from someone without their knowledge or consent? Does it make a difference from whom these are taken?
Research using human subjects; code of ethics for science
Some companies outsource their research involving human experimentation to foreign countries in Latin America and Africa that have less restrictive laws than the U.S. Is it ethical that companies be given U.S. patents for research results done in foreign countries?
How did race and/or gender play a role in access to health care in the past, and how has that changed, or not? How do race and/or gender affect decision-making on health care issues?
Should an individual have a say in the use of what has been removed from their body (tumors, cells, warts, tissue samples)? What if it was then used to significantly benefit scientific research? What if it resulted in being very profitable to a private company? Should their doctor be compensated? What’s more important – a person’s personal rights over their own tissue (even if discarded), or significant breakthroughs in medical research that benefits all?
Should parents have the right to have their minor children tested for adult-onset diseases?
How reliable and useful is fetal genetic
testing? How do we decide what to do
with that information? What choices do
Stem cell research and its social, religious, scientific implications
What's meaningful consent? Informed consent includes three components: information, understanding, and freedom. What about in specific cases where there’s indeterminate understanding and/or freedom [e.g., of pressure (spouse, religion, etc.)]?
Kids Swap DNA for Fairground Rides: Researchers' efforts to collect samples at a fair raise ethical questions: what are the issues; what's your opinion?
Code of ethics for journalism
Patented Genes: Should companies be able to own human genes? Morley Safer, on CBS 60 Minutes,
examines the idea of biotech firms patenting genes for profit. Video: 13:38 minutes
Liberate the Breast Cancer Genes: ACLU video about their May 12, 2009 suit on behalf of organizations and individuals representing over 150,000 health professionals and women's groups and individuals. The suit, against the US Patent Office and Myriad Genetics, seeks to invalidate breast cancer gene patents. Video: 5:15 minutes
Minors and medical decision making: “Society and the law have increasingly recognized the rights and responsibilities of minors in medical decision making.” What capabilities associated with consent should the health care professional look for in the minor?
Genetic testing: “More and more information is available concerning our genetic makeup and the diseases that result from genetic malfunction. . . . Molecular diagnosis has sparked a revolution in the diagnosis of genetic disorder. A molecular study can determine the presence of absence of gene mutation and thereby allow a diagnosis to be made well in advance of the appearance of clinical symptoms.” What are the social, economic, or religious implications of genetic testing?
Kevin D. O'Rourke (2000). A Primer for Health Care Ethics: Essays for a Pluralistic Society. Georgetown University Press.
Patients today don’t really have any more control over removed body parts than Mrs. Lacks did. Which is as it should be, many scientists say, arguing that Mrs. Lacks’ immortal cells were an accident of biology, not something she created or invented, and were used to benefit countless others. Most of what is removed from people is of no value anyway, and researchers say it would be too complicated and would hinder progress if ownership of such things was assigned to patients and royalties had to be paid. What are your thoughts? http://www.nytimes.com/2010/02/02/health/02seco.html
On one hand, restricting HeLa and other tissue samples could stifle scientific advancement and research. But at the same time, shouldn’t people have the right to say what happens to their cells and have some claim over them? After all HeLa has helped millions of people and changed the face of science and medicine, yet Henrietta’s children and grandchildren can’t afford health insurance. http://www.skrishnasbooks.com/2010/05/book-review-immortal-life-of-henrietta.html