Key Points

• It is essential for data and biosamples to be available and accessible in biomedical and translational research. This is because their reuse and repurposing by the wider research community can maximize their value and accelerate discovery. However, sharing human-related data is complicated by ethical, legal, and social sensitivities.
• It is noted that there are benefits to data sharing and that there is a growing understanding of the risks related to data sharing. For instance, disclosure of identifying biomedical data that can stigmatize or discriminate individuals and/or populations, or disclosure of hitherto unknown health risks to individuals who are neither prepared to receive this information, nor have access to appropriate counselling are parts of the risks related to data sharing.
• In general, as soon as human data are involved, privacy and confidentiality become major issues. National laws, policies, and regulations as well as regional legal requirements, are protective of personal identifiable data, which may include research results.
• The question is whether these frameworks in particular the Nigeria Data Protection Regulation 2019 adequately protect the privacy of research subjects of biobanking research. The protection requirements for such data require careful thought and discussion in order for researchers and data subjects to achieve their data sharing objectives. The article will critically analyse the Nigeria Data Protection Regulation 2019 (NDPR) and other current laws both National and regional in the light of privacy issues in biobanking research.

中文翻译：

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2019 年尼日利亚数据保护条例和生物样本库研究中的数据保护

关键点

• 在生物医学和转化研究中，数据和生物样本的可用性和可访问性至关重要。这是因为它们被更广泛的研究界重用和重新利用可以最大化它们的价值并加速发现。然而，由于道德、法律和社会敏感性，共享与人类相关的数据变得复杂。
• 值得注意的是，数据共享有好处，并且人们越来越了解与数据共享相关的风险。例如，披露可能对个人和/或人群进行污名化或歧视的识别生物医学数据，或向既未准备好接收此信息也未获得适当咨询的个人披露迄今为止未知的健康风险，是与以下相关风险的一部分数据共享。
• 一般来说，一旦涉及到人类数据，隐私和保密就会成为主要问题。国家法律、政策和法规以及地区法律要求保护个人可识别数据，其中可能包括研究结果。
• 问题是这些框架，尤其是 2019 年尼日利亚数据保护条例是否充分保护了生物样本库研究对象的隐私。此类数据的保护要求需要仔细考虑和讨论，以便研究人员和数据主体实现其数据共享目标。本文将根据生物样本库研究中的隐私问题，批判性地分析 2019 年尼日利亚数据保护条例 (NDPR) 和其他国家和地区现行法律。