Case Scenario: The Confidentiality Conundrum
Scenario Description: You are a researcher working on a long term study investing the impact of a new, experimental drug on patients with a rare and life-threatening disease. The study has been or going for several years, and you have built strong relationships with the participants and their families. The drug shows promising results, and it appears to be a potential breakthrough in treating the disease However, you face an ethical dilemma. A pharmaceutical company has offered you a substantial financial incentive to share your research data with them before the study is completed. They are interested in using your findings to expedite the drug's development, potentially saving more lives in the future. The company assures you that they will keep the data confidential and that it will not affect the ongoing study.
Here are some discussion points and questions for students to consider:
1. Informed Consent: Were the participants and their families informed at the beginning of the study about the possibility of sharing data with third parties? If not, how should this be addressed?
2. Confidentiality: How can you ensure that the pharmaceutical company will maintain the confidentiality of the data, especially given the financial incentive they are offering?
3. Beneficence: What are the potential benefits and harms associated with sharing the data with the pharmaceutical company? How might this decision impact the patients currently participating in the study?
4. Justice: Is it fair to offer the data to a pharmaceutical company before the study is completed, potentially giving them a competitive advantage in developing a profitable drug?
5. Professional Integrity: What are the implications for your professional integrity and reputation as a researcher if you decide to share the data or decline the offer?
6. Alternatives: Are there alternative solutions that could address both the need for confidentiality and the potential benefits of sharing the data? For example, could you negotiate a non-disclosure agreement or a collaborative research arrangement?