Ethics in data sharing

Over the past two decades, major advances in the molecular, cell biology and biotechnology research fields can be attributed to the pooled efforts of research teams and consortiums globally. Much of this collaboration is dependent on data sharing between researchers, which maximises the use of data generated. However, data sharing itself introduces new ethical considerations pertaining to informed consent, intellectual property, and ethical review standards. Given the sensitive nature of biological data, this article highlights the importance of ethics in data sharing.

Informed consent is a vital part of ethical research, ensuring that participants are not harmed or exploited. However, since widespread data sharing has become necessary for scientific innovation, concerns regarding the gaps in previous informed consent models have developed. Mainly that (i) data sharing can endanger the privacy of participant information, and (ii) current informed consent models do not account for the downstream uses of data that is stored or shared through biobanks. This means that new elements i.e., the concept of data sharing, and awareness of the appropriate ethical authorities and boards, reasons for storing data/samples and timelines of how long data/samples can be stored in biobanks should be explained to participants. Beyond comprehension of the research parameters, informed consent should now also include the continuous communication with participants at different parts of the research process. This will help facilitate trust in the research process.

Re-use of data benefits researchers by overcoming barriers to access to experimental data, reducing costs and leaving room to explore research questions that may only come up in future. On a wider scale, reluctance to share data slows down the progress of socially beneficial breakthroughs such as the development of new therapies and vaccines. Yet, the underlying ethical obstacle, in this case, is fairness, equity, and ownership of intellectual property in data sharing. Once data is made public, researchers that have access to better technologies are at an advantage in ownership, as they can analyse data and publish results faster. When two labs in one region have access to the same data, the issue of ownership can be attributed to the competition: however, when sharing data between resource-rich and resource-poor countries, the latter risk exploitation due to a lack of access to high-speed analysis technologies. This is a problem that requires the active participation of ethical review boards to mitigate unfair collaboration practices.

Ethics committees maintain and drive the standard for ethical research. Because the propensity for innovation in biosciences through data sharing is beneficial, there is a need for ethics boards to review access to shared data/samples. Data access committees determine the legal, ethical, and scientific eligibility of researchers requesting data/samples from biobanks. This eligibility could include the context of the researcher’s work to make sure it is relevant to their outcomes, as well as its applications pertinent to the needs of the community that the research group would serve. The process of developing quality ethical review will also have to develop alongside the practice of data sharing, as new challenges emerge.

Data sharing in the scientific community has multiple benefits and shows promise in advancing knowledge and innovation in the bioscience and medical fields. This makes the appropriate measures for data sharing an important subject, as ethical standards for data sharing will prevent harm and promote fairness that benefits researchers and the communities they serve.

References

Genomic Research Data Generation, Analysis and Sharing – Challenges in the African Setting

Responsible, practical genomic data sharing that accelerates research