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[edit] Article 1

Privacy protection and public goods: building a genetic database for health research in Newfoundland and Labrador

https://academic-oup-com.proxy.library.brocku.ca/jamia/article/20/1/38/2909296 [1]

[edit] Context

This article fits within this research field because they are discussing the protection and privacy of health data from Population Therapeutics Research Group (PTRG) at Memorial University (Canada), in using genealogical information offered by individuals for its genetics research database. PTRG has developed the Heritability Analytics Infrastructure, a data management structure that stores genotype, phenotype, and pedigree information in a single database, and custom linkage software to perform pedigree linkages on the genealogy database. PTRG incorporates health privacy legislation with a unique research ethics statute governing the composition and activities of research ethics boards and, for the first time in Canada, elevating the status of national research ethics guidelines into law.

[edit] Summary

This article looks at this integration of legal and ethical principles which provides a flexible and seamless framework for balancing the privacy rights and welfare interests of individuals, families, and larger societies in the creation and use of research data infrastructures as public goods. PTRG has not yet been able to confirm whether it can collect and use privately constructed family genealogies offered by individuals who are interested in furthering this work. The concern is that unless the individual who offers a genealogy has the consent of each member of the extended family, entering their genealogical information into the database might be a violation of the privacy rights of those family members, and thereby run afoul of the recently proclaimed Personal Health Information Act (PHIA) for Newfoundland and Labrador. While the issues raised here are directly relevant to the development of PTRGs data management infrastructure for conducting genetic research in Newfoundland and Labrador, they are illustrative of some of the privacy issues that pertain to the development of biobanks generally when the privacy rights of individuals potentially compete with those of family members who share some of that same personal information. They are also illustrative of some of the legal and ethical considerations that should be taken into account in the development and use of data management structures that may produce significant public goods. The complementary legal and ethical frameworks now coexist in Newfoundland and Labrador provide the legislative authority, ethical legitimacy, and practical flexibility needed to find a workable balance between privacy interests and public goods.

[edit] Strengths and Weaknesses

One strength of this research is that the research proves that health data can be released without consent because in some cases health risks to individuals do outweigh privacy rights of health information. Another strength of this article is there are no competing interests that would make this research invslid or biased. The final strength of this article that is evident is that the utility of the theoretical approach was effective. The articles title was flawed with the content and the conclusion and the method of research to prove their thesis was effective. One weakness of this article is that it contradicts itself or has a confusing layout because in the article it first mentions how “ PTRG has not yet been able to confirm whether it can collect and use privately constructed family genealogies offered by individuals who are interested in furthering this work.” and then at the end of the article it says tat for research purposes information about health can be collected and shared without consent.

[edit] Assessment

The Newfoundland and Labrador model shows early promise as an innovative policy framework to be emulated: it reconciles legal and ethical principles through seamless integration; it enables a flexible and proportionate approach for balancing privacy interests and public goods; and, it establishes an effective governance framework that legitimizes decision-makers and holds them accountable to the population whose interests they are intended to protect. This model may be instructive for other jurisdictions as they seek to construct and use biobanks and related research platforms for genetic research.


[edit] Article 2

Will the trilogue on the EU Data Protection Regulation recognise the importance of health research?

https://academic-oup-com.proxy.library.brocku.ca/eurpub/article/25/5/757/2399176 [2]

[edit] Context

This article fits within the research field because it talks about the european regimes regulation of processing health data with health research. The proposal of the European Parliament of the GDPR restricts processing personal data by requiring informed consent, regardless of the purpose the data will be used for and regardless of whether or not privacy enhancing technologies are applied. Although there are a number of situations where the version of the European Parliament proposes alternatives, informed consent seems set to become the default. In this version of the GDPR, informed consent is not only required for directly identifiable data with names, addresses or other identifiers of people, such as IP addresses, but is deemed to be necessary for all data that is not anonymous. After all, the version of the Parliament distinguishes only two types of data: personal vs. anonymous. Many comments have argued how this version could seriously jeopardise (public) health research.

[edit] Summary

In spite of the use of privacy enhancing technologies, data in health research is highly likely to contain indirectly identifiable variables, simply because of its granularity. Moreover, data that may identify subjects is needed for research in childrens diseases (age classes in months) or effects of environmental exposure (location) to name but a few. With its proposal, the European Parliament ignores the need for granular data, at least in the first steps of the research and the use of privacy enhancing technologies in further steps, to give us adequate feedback on our current practices of health care delivery and health protection. we conducted a survey of citizens’ opinions about health research and the extent to which people would be willing to give researchers access to their health data. This used a sample of 1500 members of a panel of citizens respondents appeared to have a reasonably high degree of trust in the research community (78%, compared with 92% in medical professionals and 46% in the pharmaceutical industry). Most respondents agreed that scientific health research is very important (93%). Two-thirds find it a problem when privacy regulations become more strict and make less scientific health research possible (23% has no opinion, 13% finds this a problem). At the same time, one-third find their autonomy in deciding over their ‘own’ health data more important than medical scientific progress (29% has no opinion, 40% does not agree with this statement). However, the majority (three-quarters) agree to their health data being used without informed consent, as long as this data is well protected and only used for scientific research (12% has no opinion). In our analysis, respondents with a higher education seem to have more need to decide over their ‘own’ health data by themselves. The same applies to respondents with better self-reported health and younger respondents. These outcomes seem to be in line with other findings about patient views about using patient data for health research. Our findings also show that trust is the paramount issue here.

[edit] Strengths and Weaknesses

A Strength of this article is that the articles findings prove that data protection and privacy can only be guaranteed if it outweighs the benefits of releasing the health information. One other strength of this article is that it provides many percentages for health related data for the public, such as the percentage of people that trust the research community, medical professionals and e pharmaceutical industries. One of the Weaknesses of this article is that out of 1500 members that received the heath survey, only 731 responded to the survey. This makes the results of the research skewed since the surveyed population was half the size that was intended and the people that filled out the survey could have had much different responses than the people who did not respond to the survey. Another weakness of this article is that there is a conflict of interest. This is as a result of the E.V. being an advisor to research consortia, research organisations and patient organisations.

[edit] Assessment

This kind of research contributes to a learning health care system which, in the European context, is based on the principles of solidarity, quality and long-term sustainability. Research based on large-scale registries (with the records of millions of patients) used, e.g. to determine disease prevalence would need the informed consent of all individual patients. Such procedures create biased research, which affects the quality of our health care systems. The protection of data in research should be proportional to the risks and benefits of the use of that data for improvement of health through research. This will allow future generations to have the same benefits from health research as past and current generations.


[edit] Article 3

The networked enterprise and legitimacy judgments: why digital platforms need leadership

https://www-emerald-com.proxy.library.brocku.ca/insight/content/doi/10.1108/JBS-04-2019-0073/full/pdf?title=the-networked-enterprise-and-legitimacy-judgments-why-digital-platforms-need-leadership [3]

[edit] Context

This article fits within the research field because it talks about the legitimacy of digital health platforms. This paper proposes that leaders in networked enterprises are best positioned to build organizational legitimacy. Legitimacy is often regarded as an objective organization resource or an asset that reflects the collective approval of an organization by employees and other stakeholders. The rise of communicated technologies over the past several decades has allowed organizations to become increasingly networked. In particular, a new class of social and collaborative tools – including blogs, wikis, social networking, messaging, online conferencing and video sharing – has dramatically increased the ability of employees to connect with one another and share vast amounts of information. Often labeled Enterprise 2.0, platforms with these communication technologies enable the networked enterprise

[edit] Summary

This project adopted Tosts 2011 model of legitimacy. Tost suggested institutional scholars use the social-psychological view that employees make legitimacy judgments in three forms, namely, instrumental, relational and moral. Instrumental legitimacy judgments are based on the degree to which an organization is “perceived as promoting the material interests of the individual” (p. 690). Relational legitimacy “emerges from the extent to which a social entity communicates to the individual that he or she is accorded respect, dignity and status within the group context and through group membership . . . An entity is seen as legitimate when it affirms individuals’ social identities and bolsters their sense of self-worth.” (p. 690) Moral legitimacy is attained “when it is perceived to be consistent with the evaluators moral and ethical values, judgments include perceptions or beliefs related to the morality, ethicality or integrity of an entity” (p. 690). Strategic communication has been associated with organizational legitimacy (Falkheimer, 2014); however, no known studies clearly and empirically display this connection.

[edit] Strengths and Weaknesses

A strength of this article is that it provides diagrams for readers to understand more in depth information. Another strength of this article is that the findings of the article are clear and insightful. This article explains how :For communication with employees on internal digital platforms, roughly 60-70 percent of leaders are considered active communicators in high legitimacy organizations compared to just 20-30 percent of leaders who are considered active communicators in low legitimacy organizations”. One of the weaknesses of this article is it has under 10 resources. This means that the article may not have an accurate basis of information. Another one of the weaknesses of this article is that The study was conducted by a university research institute with corporate partners.this means that the corporation may have sponsored the research and insisted it come up with a certain outcome or results, rendering this research not legitimate.

[edit] Assessment

This study shows the strong connection between each element of the networked enterprise with all forms of legitimacy judgments. As a result, leaders and communicators should focus on each aspect of a networked enterprise. This research primarily focused on the frequency of communicating as a measure of leadership communication and networked employee communication. Future research should continue to examine the links between communication in networked enterprises and organizational legitimacy. In addition to the frequency of communication, it will be helpful to explore the content and nature of this communication to gain a richer understanding of drivers of organizational legitimacy.This study shows the strong connection between each element of the networked enterprise with all forms of legitimacy judgments. As a result, leaders and communicators should focus on each aspect of a networked enterprise.


--Ap15jw 20:42, 16 March 2020 (EDT)

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