伦理网站_数据收集的伦理

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So you’re ready to collect some data and start modeling, but how can you be sure that your data has been ethically sourced?

因此，您已经准备好收集一些数据并开始建模，但是如何确定您的数据是符合道德的呢？

CW: I talk about mental health and suicide prevention in a section below.

CW：我在下面的部分中谈论心理健康和自杀预防。

当前的数据保护格局 (The Current Data Protection Landscape)

The Health Insurance Portability and Accountability Act, known as HIPAA, was passed in 1996 in order to protect sensitive and identifying personal health data after medical treatment. The goal was a strict “need to know” sharing of medical data unless the patient signed a consent form for a particular usage. There were some exceptions in the interest of the “common good”, including gunshot and stab wounds, crime-related injuries, possible abuse cases, and infectious diseases.

1996年通过了《健康保险携带和责任法案》(HIPAA)，以保护经过治疗的敏感和识别个人健康数据。 目标是严格共享医疗数据，除非患者签署了特定用途的同意书。 为了“共同利益”，有一些例外，包括枪伤和刺伤，与犯罪有关的伤害，可能的虐待案件和传染病。

A later supplement, the Omnibus Final Rule of 2013, updated HIPAA to include heavier financial penalties for organizations violating the law, patients’ rights to access electronic information, and including genetic data in HIPAA protected territory. As Dr. Weisse notes, while complete control over access to personal medical records is the “holy grail of privacy rights advocates”, our current systems of medical administration and insurance make this impossible.

后来的补充内容是《 2013年综合总线最终规则》，它对HIPAA进行了更新，其中包括对违反法律的组织施加更严厉的经济处罚，患者获取电子信息的权利以及在HIPAA保护地区包括遗传数据。 正如Weisse博士所指出的那样，尽管完全控制对个人医疗记录的访问是“隐私权倡导者的圣杯”，但我们当前的医疗管理和保险体系使这成为不可能。

While these laws are necessary and work in theory, in practice they have led to great confusion on both sides of the patient-physician boundary. Additionally, like much of the legislation governing emerging technologies (see facial recognition, Siri always listening, …), it is woefully inadequate for effectively covering technologies not yet established or imagined.

尽管这些定律是必要的，并且在理论上起作用，但实际上，它们导致了医患边界两侧的极大混乱。 此外，就像许多管理新兴技术的法规一样(请参阅面部识别，Siri总是在听，...)，该法规严重不足以有效涵盖尚未建立或想象的技术。

The recent European Union legislation, General Data Protection Regulation (GDPR), goes much further in protecting personal data. There has been much discussion over the efficacy of the law, but there is no doubt that it is one of the most stringent data protection laws in the world.