专家表示,基因检测受到数据隐私问题的阻碍
Genetic testing hampered by data privacy concerns, experts say

Genetic testing hampered by data privacy concerns, experts say

专家表示,基因检测受到数据隐私问题的阻碍

当涉及到敏感数据时,它不会比你的基因更加个人化。现在,医疗保健公司和消费者基因检测公司储存了大量的基因记录。这引发了我们的担忧,我们面临着一场剑桥分析(Cambridge analytica)式的事件,向那些本不应该接触到基因组数据的人披露基因组数据。

在旧金山举行的RSA会议上,专家们表示,由于担心基因信息可能会以意想不到的方式被使用,患者已经放弃了可能有益于他们健康的基因测试。他们还说,完全去识别病人信息(包括基因组数据)是不可能的,这进一步加剧了人们对该领域的担忧。

Kaiser Permanente的首席医疗官帕特里克·库尔内亚(Patrick Courneya)表示,出于对隐私的担忧,人们已经开始放弃基因检测。他没有具体说明是什么具体问题导致患者避免了一些检测,但其中一些可能源于对遗传宗谱的担忧。遗传宗谱是一种结合了遗传学和家族史的犯罪解决技术。生物伦理学家和公民自由监督机构已经对这种做法的潜在问题提出了担忧,因为任何在数据库中分享他们DNA的人都会为那些分享他们基因构成的人做出决定。

23andMe的首席法律和监管官员凯西·海布斯(Kathy Hibbs)表示,患者需要了解的是,基因谱系不仅仅依赖于基因记录。但库尔内亚表示,他不相信消费者会感到欣慰。

Molina Healthcare的首席安全官迈克尔·威尔逊(Michael Wilson)说,基因数据也很难安全地用于研究。威尔逊说,尽管去识别基因数据是标准做法,但要逆转这一过程并找出具体数据属于谁却太容易了。他补充说,要准确评估50到100年后基因信息的价值是不可能的,只要研究人员拥有它,它就必须得到保护。

威尔逊说,被盗的基因数据本身可能没有价值,但如果“与其他数据结合起来”,可能会有价值。

遗传联盟(Genetic Alliance)首席执行官莎伦·特里(Sharon Terry)表示,从根本上讲,人们需要对自己的数据拥有最终控制权,并拥有阻止数据共享的权力。

“我们无法识别它,”特里说,“我们可以限制访问,让人民自己掌握控制权。”

When it comes to sensitive data, it doesn't get much more personal than your genes. And there's now tons of genetic records stored by health care companies and consumer genetic testing companies. That's raised concerns we're at risk of a Cambridge Analytica-style event that reveals genomic data to parties who should never have gotten their hands on it.

Experts speaking at the RSA Conference in San Francisco said concerns that genetic information could be used in unexpected ways are already prompting patients to forgo genetic tests that might benefit their health. They added that completely de-identifying patient information, including genomic data, isn't possible, further heightening worries about the field.

People are already pulling back from genetic testing because of privacy concerns, said Kaiser Permanente Chief Medical Officer Dr. Patrick Courneya. He didn't specify what specific issues led patients to avoid some tests, but some of them likely stem from concerns over genetic genealogy, a crime-solving technique that combines genetics and family history. Bioethicists and civil liberties watchdogs have raised concerns about potential issues with the practice because anyone sharing their DNA in a database makes a decision for people who share their genetic makeup.

Kathy Hibbs, 23andMe chief legal and regulatory officer, said patients need to understand genetic genealogy relies on more than genetic records. But Courneya said he didn't believe consumers will find that comforting.

Genetic data is also difficult to use safely in research, said Molina Healthcare Chief Security Officer Michael Wilson. Though it's standard to de-identify genetic data, it's too easy to reverse that process and figure out who specific data belongs to, Wilson said. He added that it's impossible to accurately assess what the value of genetic information will be in 50 to 100 years, and it'll have to be protected for as long as researchers have it.

Wilson said stolen genetic data won't likely be valuable in and of itself but could be if "combined with other data."

Fundamentally, people need to have final control over their data, with the power to stop it from being shared, said Sharon Terry, the president and CEO of Genetic Alliance.

"We can't de-identify it," Terry said. "We can limit access and have the people themselves be in control."

When it comes to sensitive data, it doesn't get much more personal than your genes. And there's now tons of genetic records stored by health care companies and consumer genetic testing companies. That's raised concerns we're at risk of a Cambridge Analytica-style event that reveals genomic data to parties who should never have gotten their hands on it.

当涉及到敏感数据时,它不会比你的基因更加个人化。现在,医疗保健公司和消费者基因检测公司储存了大量的基因记录。这引发了我们的担忧,我们面临着一场剑桥分析(Cambridge analytica)式的事件,向那些本不应该接触到基因组数据的人披露基因组数据。

Experts speaking at the RSA Conference in San Francisco said concerns that genetic information could be used in unexpected ways are already prompting patients to forgo genetic tests that might benefit their health. They added that completely de-identifying patient information, including genomic data, isn't possible, further heightening worries about the field.

在旧金山举行的RSA会议上,专家们表示,由于担心基因信息可能会以意想不到的方式被使用,患者已经放弃了可能有益于他们健康的基因测试。他们还说,完全去识别病人信息(包括基因组数据)是不可能的,这进一步加剧了人们对该领域的担忧。

People are already pulling back from genetic testing because of privacy concerns, said Kaiser Permanente Chief Medical Officer Dr. Patrick Courneya. He didn't specify what specific issues led patients to avoid some tests, but some of them likely stem from concerns over genetic genealogy, a crime-solving technique that combines genetics and family history. Bioethicists and civil liberties watchdogs have raised concerns about potential issues with the practice because anyone sharing their DNA in a database makes a decision for people who share their genetic makeup.

Kaiser Permanente的首席医疗官帕特里克·库尔内亚(Patrick Courneya)表示,出于对隐私的担忧,人们已经开始放弃基因检测。他没有具体说明是什么具体问题导致患者避免了一些检测,但其中一些可能源于对遗传宗谱的担忧。遗传宗谱是一种结合了遗传学和家族史的犯罪解决技术。生物伦理学家和公民自由监督机构已经对这种做法的潜在问题提出了担忧,因为任何在数据库中分享他们DNA的人都会为那些分享他们基因构成的人做出决定。

Kathy Hibbs, 23andMe chief legal and regulatory officer, said patients need to understand genetic genealogy relies on more than genetic records. But Courneya said he didn't believe consumers will find that comforting.

23andMe的首席法律和监管官员凯西·海布斯(Kathy Hibbs)表示,患者需要了解的是,基因谱系不仅仅依赖于基因记录。但库尔内亚表示,他不相信消费者会感到欣慰。

Genetic data is also difficult to use safely in research, said Molina Healthcare Chief Security Officer Michael Wilson. Though it's standard to de-identify genetic data, it's too easy to reverse that process and figure out who specific data belongs to, Wilson said. He added that it's impossible to accurately assess what the value of genetic information will be in 50 to 100 years, and it'll have to be protected for as long as researchers have it.

Molina Healthcare的首席安全官迈克尔·威尔逊(Michael Wilson)说,基因数据也很难安全地用于研究。威尔逊说,尽管去识别基因数据是标准做法,但要逆转这一过程并找出具体数据属于谁却太容易了。他补充说,要准确评估50到100年后基因信息的价值是不可能的,只要研究人员拥有它,它就必须得到保护。

Wilson said stolen genetic data won't likely be valuable in and of itself but could be if "combined with other data."

威尔逊说,被盗的基因数据本身可能没有价值,但如果“与其他数据结合起来”,可能会有价值。

Fundamentally, people need to have final control over their data, with the power to stop it from being shared, said Sharon Terry, the president and CEO of Genetic Alliance.

遗传联盟(Genetic Alliance)首席执行官莎伦·特里(Sharon Terry)表示,从根本上讲,人们需要对自己的数据拥有最终控制权,并拥有阻止数据共享的权力。

"We can't de-identify it," Terry said. "We can limit access and have the people themselves be in control."

“我们无法识别它,”特里说,“我们可以限制访问,让人民自己掌握控制权。”