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Book Club Kit: Next

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Next

Michael Crichton

ISBN: 0060872985

Format: Hardcover, 448pp

Pub. Date: November 2006

Publisher: Harper Collins

The following questions were developed by Women's Bioethics Project advisory board member and bioethics researcher Sue Trinidad. They were tested and revised based on feedback from book clubs around the country. We would like to thank the many people who took the time to help us develop this program.

The questions are arranged in three sections: Use and ownership of cell lines and bodily tissues, gene patents and transgeneic experimentation. They are designed to raise key ethical issues, provide important information on the science, and help you get in touch with your own moral compass. With a nod to the realities of many women’s lives, we have written them in such a way that you can participate in the discussion even if you haven’t read the books.

We suggest you read through the questions and select 5-10 for discussion purposes. The last question is the ACTION CONNECTION QUESTION which ties all the issues raised into a relevant policy consideration. After your discussion, we encourage all readers to check out the Policy Questions section of the website for more detailed information on the science, ethical frameworks to consider these issues, and policy options.
 
 

Bioethics Book Club Discussion Questions

Bioethical Issue: Use and Ownership of Cell Lines and Bodily Tissues

 
As Crichton notes in the epigraph, “This novel is fiction, except for the parts that aren’t.” Next highlights a number of current ethical issues around genetic research.

One of the main plotlines of Next centers on Frank Burnet, a cancer survivor who is suing the University of California for involving him in research without his consent and selling his cells to a pharmaceutical company. He loses his case, with the court affirming that the cell line grown from Burnet’s cells is owned by BioGen Pharmaceuticals. When the BioGen laboratories are breached and the cell line in BioGen’s possession is destroyed, the company hires a bounty hunter to obtain new samples from Frank Burnet—by force, if necessary—or, failing that, to take samples from his daughter or grandson.

While Crichton’s edge-of-the-seat storyline depends on a few false premises (eg, that ownership of a cell line is tantamount to ownership of the cells in a person’s body—or the bodies of his or her blood relatives contain identical cells), it is based on a real case.

• John Moore was treated for leukemia at the UCLA Medical Center beginning in 1976. During the course of his treatment, a physician researcher learned that Moore’s blood contained a substance that could be valuable in medical research. Over the next several years, the doctor ordered a number of procedures—including the removal of Moore’s spleen and taking samples of his blood, bone marrow, and even sperm—all the while presenting these activities as part of Moore’s treatment. Moore, who lived in Seattle, kept making the trip to UCLA because he was told that the treatment he needed could not be done locally.

What was happening behind the scenes was not focused on treatment, but on commercially valuable research. In 1981, the UCLA Board of Regents sought a patent on the cell line Moore’s doctors had created from the samples they had taken. Both the university and Moore’s doctors stood to make substantial profits.

Moore sued, charging both that the researchers used him for research without telling him or obtaining his consent, and that he was owed compensation for his property (ie, the cells from which the cell line had been developed). In John Moore v. Regents of the University of California (1990), the California Supreme Court ruled that the researchers failed to obtain informed consent for Moore’s participation in research—a loss for UCLA—but that Moore did not retain property rights to his cells, which were classified as medical waste—a loss for Moore.

Do the Court’s findings seem fair to you? Why or why not?

 

Which do you see as the greater harm, failing to obtain informed consent, or failing to give Moore a share in the profits?

 

What rights should a patient have in this situation?

 

Some people argue that individuals have a moral obligation to agree to participate in health research, even if the research may not benefit the individual directly. Do you agree? Why or why not?

• Under current law, health care institutions generally have the right to retain “medical waste”—blood samples, pathology samples, etc.—and to use them in future research. Some people suggest that health care institutions should be required to obtain the individual patient’s consent to use his or her tissue for research purposes, and that the consent should be specific. For example, if a person gives consent for her blood to be used in a cancer treatment study, the research team cannot subsequently use that sample for any other purpose without asking first. 

Do you agree with Crichton’s recommendation that legislation be passed to clarify patients’ rights in this situation?

 

Efforts are currently under way to build national specimen banks for genetic research. Do you think this is different from other kinds of research? Are there other protections that should be enacted for genetic information? Why or why not?

•In a similar case, cells grown from the cells of a woman named Henrietta Lacks are used in laboratories around the world. Shortly after Lacks’ death, researchers asked her family if they could use her cells to help other families with a similar history of aggressive cancers. The family agreed, but they received no financial compensation and, they say, no further information about how their mother’s cells were being used.

Author Rebecca Skloot is publishing a book about this case in 2007. See her website for related articles and more information: http://www.nasw.org/users/skloot/index_HeLa.htm

What, if anything, does the research community owe to Henrietta Lacks’ family?

 

What about those who are benefiting financially from the HeLa cell line?

Bioethical Issue: Gene Patents—

 
• Using genetic engineering techniques, an engineer developed a bacterium that could eat crude oil. Believing that his creation could be commercially valuable in cleaning up oil spills, the engineer (Ananda Mohan Chakrabarty) applied for a patent. His application was rejected, on the grounds that living things could not be patented. Chakrabarty sued, and in the 1980 case Diamond v. Chakrabarty, the US Supreme Court ruled that “live, human-made micro-organisms” can be patented.

Does it seem reasonable to regard Chakrabarty’s genetically engineered bug as an invention?

 

What might be the implications of Diamond v. Chakrabarty for human cloning? For transgenic experimentation?

 
• But the story doesn’t end with genetically engineered microorganisms. Between 1981 and 1995, more than 1,175 human genes were patented. The story of Myriad, a Utah-based biopharmaceutical company, is illustrative of the ethical issues involved in gene patents.

Myriad first made news with its test for breast cancer. Studies suggest that between 5 and 10% of breast cancers diagnosed in white women can be traced to changes in the BRCA1 or BRCA2 genes. While this incidence is too low to make screening for all women a good idea, genetic testing makes sense for women who have a strong family history of breast and/or ovarian cancer because the mutations confer a much higher than average risk of developing cancer.

Myriad won the race to sequence these genes and received US patents for the BRCA1 and BRCA2 genes in the mid-1990s. The company went on to develop a patent-protected genetic test for breast cancer susceptibility. By patenting the genes, not the test itself, Myriad has claimed exclusive rights to any testing method that focuses on these genes. The patents essentially granted Myriad a worldwide monopoly on breast cancer susceptibility testing. Laboratories that want to perform the test anywhere in the world must purchase a license from Myriad and pay substantial royalties for each test they perform. The company has encountered resistance to its patent exclusivity in Europe and Canada.

What might be some of the ethical implications of Myriad’s monopoly on breast cancer susceptibility testing?

 

In the Myriad case, the patent was granted for sequencing the gene—not for inventing something new (as in Diamond v. Chakrabarty). Do you think companies, universities, or individuals should have the right to patent gene sequences?

 

In his policy recommendations at the end of the book, Crichton recommends that gene patents be eliminated. Do you agree with him? Why or why not?

 

Some people would argue that eliminating the ability to patent genes will remove financial incentives for researchers to do this work, and that progress toward treatments and cures will be slowed or stopped as a result. What do you think about this argument?

Bioethical issue: Transgenic Experimentation—

• Transgenic experimentation generally refers to research that moves genes from one species to another. Crichton introduces three transgenic creatures in the novel: Gerard, a wry, wisecracking parrot; Dave, a “humanzee” child who joins the family of the researcher who created him; and a mysterious, multilingual, foul-mouthed ape in the Sumatran jungle. Each of these creatures has the ability to communicate with humans, and each encounters substantial difficulties as the only one of its kind.

Transgenic experimentation has been occurring for about 20 years now, in both plants and animals. Scientists have created rabbits that glow in the dark, as the result of insertion of a jellyfish gene. Others have worked on “pharming” projects, in which an animal’s genes are altered to cause it to produce medicine in their milk. Mice have been genetically engineered to have human cancers, to further medical research into those diseases; and agricultural researchers have worked to develop plants that are disease resistant, have better storage characteristics, or deliver a more complete range of nutrients.
 

What forms of transgenic experimentation, if any, do you think should be allowed? Are there any kinds of transgenic experimentation that should be banned altogether?

 

Transgenic experimentation raises important questions about what makes us human, and what genetically conferred qualities or traits might make another creature seem “too human.” Some have suggested that the line be drawn at the brain, recommending that  researchers should avoid experiments that could create a non-human life form with human consciousness. What do you think? Where should the line be drawn?

 

Is there an ethical problem, in your view, with transgenic experimentation in agricultural products? Some argue that farmers have always performed transgenic experimentation—for example, hybridizing different kinds of corn to achieve an especially tasty variety. Others worry that genetically modified foods could have negative health effects we cannot anticipate today. Still others believe that this kind of experimentation endangers biodiversity and the natural order. What do you think?

 

If some kinds of transgenic experimentation should not be done, what kinds of policies should be in place?

 

Who should be responsible for developing such rules? The federal government? State governments? Institutions? Professional societies of scientists?

 

What kind of enforcement would be necessary, and could such efforts effectively  identify and control prohibited research activities? 

Although genetic engineering remains on the distant horizon, technological advances are bringing it from the imaginable to the possible. Policy makers are evaluating the potential options. Based on today’s discussion, what factors would you want policy makers to keep in mind as they decide the future of genetic engineering? 
 
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