Question

what ethical concerns do you have about the sharing of health data online

Answer 1

Sharing patient information can help providers reduce readmissions, avoid medication errors, and even decrease duplicate testing.healthcare organizations need to consider HIPAA regulations and state privacy rules when it comes to patient information. While HIPAA violation concerns are often cited as a reason for not sharing data, federal agencies are working to ensure that entities know this is not the case.HIPAA supports the electronic exchange of information, including contagious disease tracking, provider participation in cancer registries, and monitoring the health of children who have experienced lead poisoning.Every aspect of the health informatics profession is affected in some way by ethical and legal concerns. The issue essentially comes down to finding a way to balance the need to protect the security of patient information with the potential for better care and outcomes associated with greater interoperability and improved ability to share records among healthcare entities.

Moral values are an indispensable component of successful mechanisms of data sharing.Gaining clarity about the values at play is crucial before we can determine which values need to be retained and which may need to be traded off against each other.six core values that we considered to be essential for the ethical sharing of data using ICT platforms: scientific value, user protection, facilitating user agency, trustworthiness, benefit and sustainability

Scientific value

When discussing scientific value in online data sharing platforms, we are referring to the need for quality, quantity and accessibility of data to be of sufficient standard to allow morally responsible data sharing

User protection

While the term user protection is often used in relation to privacy, in the context of morally responsible ICT based health data sharing; we consider that user protection could also include the protection of user’s dignity, the protection of user’s confidentiality, data security, and informed consent

Facilitating user agency

Facilitating user agency implies a promotion of autonomy – the capacity of an individual to be self-governing, make decisions, and to act in accordance with them, as well as with her values, commitments and life goals

Trustworthiness

Trustworthiness is a feature of human relations that “is needed precisely when and because we lack certainty about others’ future action: it is redundant when action or outcomes are guaranteed”

Benefit

Benefit We contend that equity in the distribution of benefits is an important value related to morally appropriate sharing of health data. We use the concept of benefit as a wide umbrella term to cover all issues relevant to the augmentation of benefits and their distribution, or, in other words, to the value of efficiency and distributive justice. We can make our genetic data or biospecimens available for research and serve a common goal in that way