I don’t think we have any reason to hesitate about data sharing anymore. Data sharing drive our human community forward. Every time, when data/information is shared, the knowledge we have is enhanced, especially of scientific knowledge. The conventional of data sharing, for example, is in academic journals we are familiar with or traditional report in government unit. The two types are what makes healthcare practices has been improved. However, nowadays, some public data is no more in an ivory tower or requires authority or privilege to access as in the past. Anyone is and should be able to access useful public data to take part in the quality of life improvement. An example of public data sharing by government and public is https://healthdata.gov/. The data is managed to facilitate the re-using of data and result in a variety of data format. It enables data to be used for further research and collaborations.
What the in-charge should be thinking about is the privacy of data sources and security of data management. Apart from the public data as in the above example, in the age of the internet of things, personal data generated automatically through personal devices is to be concerned the most as it is till beyond control when data is transmitted through the devices. Data anonymization is challenging. Ownership of such data must be defined and discussed. For me, in the personal level, protection of personal data is still vulnerable, comparing to of level of the public or private organization.
In the case of Henrietta Lacks, it’s true that it’s on the basis of non-maleficence and beneficence but not on an autonomy. The “personal data” was taken without consent from herself or her family. The suffering was because of not being treated with respect the self-determination and human dignity.
Inevitably, we are heading to a digital society, sooner or later, where all personal and societal activity is driven by data. Society, where think about data sharing first, can frame how they can live and exploit with such future in advance and how to protect themselves and its people through conceptual knowledge and practices, laws and regulations and most importantly data literacy of citizen. Such self-awareness, both in personal and societal level will help strongly speed up data sharing after gaining trust from the public.