Health Data Privacy: Why Eroding Public Trust Harms Medical Research
Using Data Privacy to Empower Health Research
The importance of data security and data privacy policies have recently come under scrutiny due to revelations around Google’s Project Nightingale.
The initiative with Ascension, the nation’s largest nonprofit health
system, granted Google access to medical records of more than 50 million
individuals in 21 states and may hinder the trajectory of health
discovery by eroding “consumer” trust.
While
historically it might have been a safe harbor to stay within the letter
of the law, consumer sentiment around health data privacy, control, and
opportunity has shifted dramatically in the last year. The biggest
challenge affecting the sharing of individual data is the establishment of trust between the individual and the researcher.
Mistrust has developed as a result of the unethical and/or unconsented
use of data for research purposes – like the cases of HeLa cell line
creation, and the Tuskegee and Havasupai studies – and are reinforced by
more recent examples – like the study to find a gay gene and the study
of extreme inheritance using the UK BioBank. Innovations in genomics
and AI benefit the population and fuel the changing needs of discovery,
however, when trust and transparency are compromised, health discovery
can be harmed.
Re-establishing
trust amongst individuals contributing data for research must be
addressed directly through various efforts, including:
1. the transparency of data handling and data usage,
2. a measure of reciprocity in the value achieved via data usage, and
3. the ability of the individual data contributor to exert control over the use of their data throughout the research process.
Ideally,
these elements contributing to the re-establishment of trust are
implemented through adequate technologies, contractual arrangements with
research participants, and a regulatory oversight environment that
enforces accountability on the part of the data manager.
Switching
the model of control from institutions to individuals offers a solution
that can empower health research that is more representative of the
population(s) in need of improved and more cost-effective healthcare.
Benefits of Establishing Trust in Research
Researchers
can establish trust via the secure, seamless contribution from
participants that have otherwise been grossly under-represented in
medical research. For example, a recent study from the National Cancer
Institute Center to Reduce Cancer Health Disparities found only one-tenth
of their biorepositories specimens are from non-white patients. Despite
this lack of wide-spread ethnic representation, there are several
studies that signal the benefits of research including understudied
populations that include the revelation of new insights on disease and
therapy response.
Moreover, not all of the global population is of
European descent, which suggests potential benefits of expanded
diversity as the field of precision medicine evolves to address the
growing needs in healthcare that can benefit all people.
Additionally,
a health data platform that implements privacy policies, enables
individual control and prioritizes trust inverts the research paradigm,
transforming the individual data contributor from research subject into a
research partner. This new person-centered paradigm holds the promise
of a valued community engagement that fuels richness and depth of
information that is longitudinal and provides researchers the
information needed to unlock discoveries necessary to prevent the onset
of disease and even intervene unavoidable disease earlier.
Preventing Misuse of Data in Research
Fortunately,
the technical requirements of transparency, reciprocity, control, and
privacy can be supported by modern infrastructures that have moved into
the mainstream of information technology. Cloud platforms provide a
level of security that can be coupled to a set of privacy policies that
fully support data privacy control by individuals. Furthermore, the
coupling of an immutable corporate charter to focus on data uses that
directly contribute to societal benefit via health and medical research
ensures that data misuse is prevented contractually.
Holding Researchers Accountable
Several
processes are still required to ensure that the use of data is
restricted to research aimed at health and medical advancements. The
first is the evaluation of potential researchers and their discovery
aims. The second is that all operations on data are themselves available
for public review and are executed in an environment that can leverage
security authorizations of data contributors and data researchers alike.
The final process required involves the downstream research usage of
data shared that should remain under the control of the data subject
rather than downloaded to a research environment beyond the control of
the data subject. It is essential that these processes support the
ability of data subjects to completely erase their data to be
“forgotten.”
The
continual erosion of public trust in the storage and sharing of their
medical data only serves to harm medical research. It is the
responsibility of the institution to implement and adhere to strict data
privacy policies that recognize an individual’s right to control their
data. Health research will be enhanced through more representative
participation (ie, social, economic, and ethnic diversity) that in turn
should empower discoveries otherwise unachievable. By establishing a
direct engagement with the individuals in a study as partners, the
researcher can support the individuals’ desires to have a positive
societal impact through the sharing of their data.
Your Chip eligibility pa is based on your household size and income and determined by the government and you can apply any time of year. To know more details please contact us in the comment section.
Comments
Post a Comment