Bioethics Case Study Assignment
Choose one of the cases below to further investigate. Write a response identifying the ethical dilemma and including some background information on the issue. You should then outline the stakeholders in the case, the possible options in the case, and which option each stakeholder might choose. Provide the reasoning for each stakeholder’s choice. Conclude with the option that you think is best, and share your reasoning. Demonstrate some reflection here – it is okay to talk about your life experience and moral/ethical values here. Your response should include at least two scientific sources.
There are no right or wrong answers – only well and poorly argued ones.
This assignment is out of 125 points and should be between one and two pages.
Dr. John Smith, a cancer researcher, holds a patent for a human gene, PROS1, that appears to be a marker for prostate cancer. He obtained the patent so that he can investigate this gene further without worry of other researchers competing with him. This is important to Dr. Smith because it took 10 years to isolate PROS1. Identifying novel genes is an expensive process, and over the 10 years, John spent nearly all of his funding. He is hoping that having a patent will attract investors to his research so that he will have the financial support he needs to continue. However, a coalition of patients, doctors, and scientists is suing Dr. Smith over the legality of gene patents. The case has made it to the Supreme Court. The attorneys representing Dr. Smith argue that researchers must be able to protect their discoveries. Otherwise there will be no incentive for discovery of new genes and their relationships to human disease. During his research, Dr. Smith used recombinant DNA technology to remove the PROS1 gene from some human cells and put in a different piece of DNA to allow for further investigation. His attorneys contend that removing the PROS1 gene from the genome means that the gene is no longer a “product of nature” and is, therefore, patentable. Attorneys for the other side argue that gene patents stifle research. Anyone wishing to investigate PROS1 must either get permission from Dr. Smith or pay a fee. The attorneys also argue that simply removing a gene from the genome for further study does not alter its sequence or fundamental properties. Therefore, the gene is still a product of nature and should NOT be patentable. If you were on the Supreme Court, which side would you rule in favor of?
Jim Sanders is a small business owner; he owns a bakery in the corner of town. The bakery currently has ten employees. Jim is interested in hiring one more employee, a web content editor, who can help launch the bakery’s transition to an online medium. Two candidates apply for the position and both are highly qualified with similar work experience and skills. Even after Jim has interviewed both candidates, he isn’t sure which one he will hire. However, he learns soon after, through a Facebook post, that Candidate #1 has a genetic risk for multiple sclerosis (MS). The candidate is healthy as of now, but it is possible that the disease will manifest in the future. Jim and his wife Sandra have three children who are in high school and will be attending college soon. Jim knows that he will not be able to afford his children’s education AND the potential increase in insurance premiums and/or increased sick days, should Candidate #1 develop the disease. Jim decides that he is not willing to take the chance, and he ends up hiring Candidate #2, who is not genetically predisposed to any disease. Because his business is small with only 10 employees, the federal Genetic Information Nondiscrimination Act does not apply to him, and he is not breaking any laws. If you were Jim, would you have hired candidate #2 also?
Calvin and Lisa have been trying to get pregnant for the past two and a half years, and they finally receive the news they have been waiting for. They are expecting! Lisa is elated by the news but starts to worry about the health of their future child. Tay-Sachs has devastated her family. Tay-Sachs is an incurable disease, which appears during the first 3-10 months of a child’s life, progresses to seizures, loss of voluntary movement and ultimately death by the age of 5. She has watched two siblings and four cousins die from this horrible disease in her lifetime, with the oldest living to be just five years old. Since she has a history of this genetic condition in her family, she is curious about the available prenatal testing options. Lisa and Calvin have jointly decided that bringing a child into the world with Tay-Sachs is not an option, and they will terminate the pregnancy if their baby tests positive for Tay-Sachs. When both Lisa and Calvin visit the obstetrician, he tells them there are two procedures that will provide the fetal cells necessary to perform prenatal genetic testing: chorionic villus sampling (CVS) and amniocentesis. CVS can be done 10-12 weeks into the pregnancy while amniocentesis can be done 15-20 weeks into the pregnancy. Both procedures are invasive and have associated risks. Although CVS can be done earlier, it has a significantly higher risk of miscarriage associated with it (approximately 1 in 100, depending on the provider), compared to amniocentesis. However, if the couple finds out the baby has Tay-Sachs, the termination procedure is more straightforward at 12 weeks compared to 20 weeks. If you were Calvin or Lisa, what would you do?
Scott, a 30 year-old male, has a family history of Huntington’s disease. Huntington’s disease causes neural degeneration, and eventually death. Affected individuals may experience mental and behavioral changes including paranoia, hallucinations and dementia, as well as physical symptoms such as difficulty walking and jerky movements. The disease has a late onset, which means symptoms don’t show up until about 35-40 years of age. Most people live about 20 years after symptoms become apparent. Scott decides to be tested for the genetic mutation that causes Huntington’s disease and finds out that he has it and will eventually get the disease.
Meanwhile, Scott’s wife, Catherine, discovers she is pregnant. Together they decide that they should get genetic testing done to determine if their unborn child inherited the mutation and will also get Huntington’s disease in adulthood. They will continue with the pregnancy regardless of the results. Although there is no medical intervention possible to stop the disease, they feel strongly that they want to know about their child’s future. At their next obstetric appointment, they inform their doctor of their wishes. The doctor hesitates because the parents are requesting information about a disease that will not affect their child until adulthood. At stake is the unborn child’s autonomy. Perhaps the child will NOT want to know if Huntington’s will strike in the future. But, by requesting the information during pregnancy, the parents are precluding their child’s free will. The parents counter that they will be better able to prepare their child for the future and will know how to offer appropriate emotional and psychological support. If you were the doctor, what would you decide?