Name: 請停止購買家庭基因檢測 | 23andMe 爭議 (Please Stop Buying Home Genetic Tests | 23andMe Controversy)
Uploaded: 2025-02-05T03:27:39.000Z
Duration: 10 min 8 s

Genetic testing kits promised us a futuristic look into our DNA, all with the simplicity and convenience of a box delivered right to our front doors.

基因檢測試劑盒向我們許諾，我們將以未來派的眼光來審視自己的 DNA，而所有這一切都將通過一個直接送到家門口的盒子來實現，簡單而方便。

But what happens when the companies behind the promises start to implode?

但是，當承諾背後的公司開始內訌時，會發生什麼呢？

From misleading health guidance to shocking privacy breaches, consumer genetic testing failures are starting to pile up.

從誤導性的健康指導到令人震驚的隱私洩露，消費者基因檢測的失敗案例開始堆積如山。

In this video, we'll dive deep into the dark side of consumer DNA testing, expose the cracks in the science, including my own personal experience, and unpack the fallout from the recent 23andMe debacle.

在本視頻中，我們將深入探討消費者 DNA 檢測的陰暗面，揭露科學中的漏洞，包括我自己的親身經歷，並解讀最近 23andMe 事件的影響。

And huge thanks to Ground News for sponsoring this video.

衷心感謝 Ground News 贊助本視頻。

Consumer Reports warns while these tests can be helpful, some may find their results troubling.

消費者報告》警告說，雖然這些測試可能會有所幫助，但有些人可能會發現其結果令人不安。

These home testing kits initially gained popularity by promising to give you some information about where your ancestry stemmed from.

這些家庭檢測試劑盒最初是通過承諾為您提供一些有關您祖先來源的資訊而受到歡迎的。

You probably know how it works, at least at the basic level.

你可能知道它是如何工作的，至少在基本層面上是這樣。

You spit into a plastic tube, mail it off, and then a few weeks later, you get a DNA report with information about your background, inherited trades, et cetera.

你往塑料管裡吐口水，然後寄出去，幾周後，你就會得到一份 DNA 報告，其中包含有關你的背景、遺傳行業等資訊。

Early on, like many others, I was curious about my own origins and actually reached out to one of the big companies to partner up and help me investigate.

和許多人一樣，我很早就對自己的身世感到好奇，並主動聯繫了一家大公司，希望他們能與我合作，幫助我進行調查。

But in the middle of the project, they abruptly shifted their focus from my family tree to the bigger financial pie in the game, health insights.

但在項目中期，他們突然將重點從我的家譜轉移到了遊戲中更大的財務蛋糕--健康洞察力。

They wanted me as a doctor to promote at-home genetic health testing.

他們希望我作為一名醫生來推廣家庭基因健康檢測。

This was new to me, so I needed to look more deeply into what was being offered.

這對我來說很新鮮，所以我需要更深入地瞭解所提供的服務。

When I dove in and actually looked at their data, I found that the health insights they were giving were usually incomplete or completely inactionable.

當我深入研究他們的數據時，我發現他們所提供的健康見解通常並不完整，或者完全無法付諸行動。

For example, how valuable would it be to know that I'm at low risk for developing type 2 diabetes?

例如，如果我知道自己罹患 2 型糖尿病的風險很低，這會有多大價值？

Or another way, how useful is it to know that I'm at high risk for developing Alzheimer's disease?

或者換一種說法，知道我是阿爾茨海默病的高危人群有多大用處？

There's really no action I can take given that result, and now I'm forever scarred with that anxiety-provoking news.

面對這樣的結果，我真的無計可施，現在我永遠都被這個令人焦慮的消息傷透了腦筋。

Then came all the issues for cancer testing.

隨後，癌症檢測問題接踵而至。

It seemed like that home testing kit was a legit test to rule out genetic cancers, but in reality, they were giving me results without testing all the potential mutations and sequences to make it a truly valuable test to use in lieu of proper genetic counseling.

看起來那個家庭檢測試劑盒是一個排除遺傳性癌症的合法檢測，但實際上，他們給我的結果並沒有檢測所有潛在的突變和序列，是以無法代替適當的遺傳諮詢，成為一個真正有價值的檢測。

To me, this form of middle ground, entertainment-esque testing only created more confusion and certainly didn't replace a true meeting with a genetic specialist, so I killed the deal, and I've been very wary about these type of tests ever since.

對我來說，這種中庸的、娛樂式的測試只會造成更多的困惑，當然不能取代與遺傳專家的真正會面，所以我放棄了這筆交易，從那以後我就對這類測試非常警惕。

In fact, I've warned numerous patients and loved ones for years about the potential issues, and today, it turns out I was right.

事實上，多年來我一直提醒眾多病人和親人注意潛在的問題，而今天，事實證明我是對的。

Almost all my concerns have come to life with the recent disaster at 23andMe.

最近 23andMe 公司的災難幾乎讓我所有的擔憂都變成了現實。

Despite my early negativity of the industry, 23andMe started as a huge success story, once valued more than $6 billion.

儘管我早期對該行業持否定態度，但 23andMe 一開始就是一個巨大的成功故事，估值一度超過 60 億美元。

The 18-year-old company basically launched an entirely new industry, supplied data for studies on genetically-influenced diseases, and helped cops solve cold cases, but lately, things haven't been going so well.

這家有 18 年曆史的公司基本上開創了一個全新的行業，為受基因影響的疾病研究提供數據，並幫助警察破獲懸案。

All of the company's board members quit, and the company announced plans to lay off 40% of its employees and discontinue its therapeutics division, which had been working to develop cancer drugs.

公司董事會成員全部辭職，公司宣佈計劃裁員 40%，並終止一直致力於開發抗癌藥物的治療部門。

Well, let's start with the fact that the science doesn't live up to the hype of the marketing.

那麼，我們先來看看科學並沒有達到營銷炒作的效果。

Initially, the FDA actually banned 23andMe from selling tests that included health information because they couldn't reliably predict disease risk.

最初，FDA 實際上禁止 23andMe 出售包含健康資訊的測試，因為它們不能可靠地預測疾病風險。

The FDA said consumers were being misled into thinking their results were clinically valid, and also that the test results were too complex for people to interpret on their own.

美國食品和藥物管理局說，消費者被誤導，以為他們的結果在臨床上是有效的，而且檢測結果過於複雜，人們無法自行解釋。

I actually agree, because for example, if you were interested in genetic planning, let's say, or ruling out a genetic condition, these tests were not a replacement for a proper medical-grade test and visit with a geneticist.

其實我也同意，因為舉例來說，如果你對遺傳規劃感興趣，比方說，或者想排除遺傳病，這些檢測並不能取代正規的醫學級檢測和遺傳學家的會診。

Sadly, the FDA was pressured into backtracking on this ban, saying 23andMe tests came with clear enough disclaimers for consumers to know that the reports are basically just for fun and shouldn't be used to make medical decisions.

令人遺憾的是，FDA 迫於壓力在這一禁令上打了退堂鼓，稱 23andMe 測試附有足夠明確的免責聲明，讓消費者知道這些報告基本上只是為了好玩，不應被用來做出醫療決定。

Okay, sure, there are disclaimers, but the marketing for these direct-to-consumer genetic tests is really good.

好吧，當然有免責聲明，但這些直接面向消費者的基因檢測的營銷真的很不錯。

So good that even if companies don't say, take your results seriously, people still do.

好到即使公司不說 "認真對待您的成果"，人們也會這麼做。

Do I have a heart condition that's gonna kill me in my sleep?

我有心臟病，會在睡夢中死去嗎？

Actually, if you're worried that you're genetically predisposed to a serious disease, whether it's a cancer, a neurodegenerative disorder, or anything else with a hereditary component, then your first move should be talking to a doctor not buying an at-home test.

事實上，如果你擔心自己在遺傳上易患某種嚴重疾病，無論是癌症、神經退行性疾病，還是其他任何有遺傳因素的疾病，那麼你首先要做的應該是與醫生溝通，而不是購買家庭測試。

Last year, hackers were able to access genetic data for almost 7 million 23andMe users.

去年，黑客獲取了近 700 萬 23andMe 用戶的基因數據。

Criminals broke into the accounts of people who reused usernames and passwords on previously hacked sites.

犯罪分子侵入了重複使用以前被黑網站用戶名和密碼的用戶的賬戶。

Those hackers were then able to steal files with ancestry info for those who've opted in into a DNA relatives feature that allows related users to automatically share data with each other.

這些黑客隨後竊取了那些選擇了 DNA 親屬功能的用戶的祖先資訊文件，該功能允許相關用戶自動分享彼此的數據。

Hackers basically got access to your entire family tree and for some reason, specifically went after users with Chinese or Ashkenazi Jewish ancestry and then sold that data on the dark web.

黑客基本上可以訪問你的整個家譜，出於某種原因，他們專門針對有中國或阿什肯納茲猶太血統的用戶，然後在暗網上出售這些數據。

While this hack affected a lot of people, it actually wasn't the worst case scenario.

雖然這次黑客攻擊影響了很多人，但實際上並不是最糟糕的情況。

They got profile information, but thankfully they didn't steal the full genetic codes.

他們得到了檔案資訊，但幸好沒有竊取完整的基因密碼。

There's even more risks to discuss, but first, as you can tell, I went deep researching for this video, a lot of which was done on Ground News, an app and website that combines the world's news in one place, allowing me to compare coverage and verify sources of information.

還有更多的風險需要討論，但首先，正如你所知道的，我為這個視頻做了深入的研究，其中很多是在 Ground News 上完成的，這是一個將全球新聞整合在一起的應用程序和網站，允許我比較報道內容並驗證資訊來源。

Remember when I said 23andMe had cut 40% of its workforce and ended its therapeutics division?

還記得我說過 23andMe 已經裁員 40% 並結束了治療部門嗎？

I actually read that story on Ground News, which provides so much more insight to the story than just the words in the article.

實際上，我是在 "地面新聞 "上讀到這篇報道的，它提供了比文章中的文字更多的資訊。

For example, they show me that over 50 outlets have covered this story, the bias distribution of the coverage so I know if the story is slanting in one direction politically, and the factuality rating that tells me how trustworthy these sources actually are.

例如，它們會告訴我有超過 50 家媒體報道了這一新聞，報道的傾向性分佈讓我知道新聞是否有政治傾向，以及事實性評級告訴我這些消息來源的可信度有多高。

I love comparing the coverage to see which outlets are sharing each other's reporting, all of which helps me form the most accurate opinion on what's happening in the news.

我喜歡比較各種報道，看看哪些媒體分享了彼此的報道，所有這些都有助於我對新聞中發生的事情形成最準確的看法。

Their blind spot feature is also pretty great in that it can show me stories that I may have missed and fill in critical gaps of my understanding of a story.

他們的盲點功能也非常棒，它可以向我展示我可能錯過的故事，填補我對故事理解的關鍵空白。

Like this 23andMe story actually has almost no coverage from conservative media outlets, making it a blind spot candidate for people who follow those outlets.

就像這篇 23andMe 的報道實際上幾乎沒有來自保守派媒體的報道，這讓關注這些媒體的人成為了盲點候選人。

Go to ground.news slash Dr. Mike or scan the QR code to subscribe now.

請訪問 ground.news slash Dr. Mike 或掃描二維碼立即訂閱。

My link actually saves you 50% on their top tier vantage plan, the same one I use, making it less than $5 a month.

我的鏈接實際上為您節省了他們頂級 vantage 計劃的 50% 費用，我用的也是這個計劃，每月不到 5 美元。

It's also their biggest discount of the year, so check them out today or even gift it to a loved one.

這也是他們今年最大的折扣，所以今天就去看看吧，甚至可以把它送給心愛的人。

Probably the most relevant concern I have is about third-party data sharing. 23andMe isn't a healthcare organization, so they're not required to protect your health info the same way hospitals or even health insurance companies are, aka no HIPAA.

我最擔心的可能是第三方數據共享。23andMe 不是醫療機構，是以他們不需要像醫院甚至醫療保險公司那樣保護你的健康資訊，也就是不需要 HIPAA。

It's allowed to share user data externally and can even change the sharing policies at any time.

它可以對外共享用戶數據，甚至可以隨時更改共享策略。

Originally, 23andMe shared genetic data with other companies and institutions unless users specifically said they couldn't.

最初，23andMe 與其他公司和機構共享基因數據，除非用戶明確表示不能共享。

By default, they were sharing your data without you even knowing.

默認情況下，他們會在你不知情的情況下共享你的數據。

Thankfully, this policy did change in 2018, and now you do need to give consent before your data goes somewhere else.

值得慶幸的是，這項政策在 2018 年確實有所改變，現在您確實需要在您的數據轉到其他地方之前徵得同意。

You can agree to let the company share your data with all third parties, like insurance companies and big pharma.

您可以同意讓公司與所有第三方（如保險公司和大型製藥公司）共享您的數據。

One positive thing here is that health insurance companies can deny coverage or charge people more based on their genetic testing results.

一個積極的方面是，醫療保險公司可以根據基因檢測結果拒絕承保或向人們收取更多費用。

Genetic discrimination has been prohibited by federal law since 2008, but that's only health insurance.

自 2008 年以來，聯邦法律一直禁止基因歧視，但這只是醫療保險。

In many cases, companies that sell disability or long-term care insurance are allowed to factor genetic information into their policies.

在許多情況下，銷售殘疾保險或長期護理保險的公司可以將基因資訊納入保單。

Now, if you don't consent to all third-party sharing, you could still agree to let 23andMe share your data with researchers for studies.

現在，如果你不同意所有第三方共享，你仍然可以同意讓 23andMe 與研究人員共享你的數據用於研究。

This can allow you to participate in research with your data pooled into a group or let researchers use your individual-level genetic data, both pooled and individual-level data are de-identified using a code or algorithm before being included in research to help protect the user's identity.

這樣，您就可以將自己的數據彙集成一組數據參與研究，或者讓研究人員使用您的個人級基因數據，彙集的數據和個人級數據在納入研究之前都會使用代碼或算法進行去標識化處理，以幫助保護用戶身份。

However, some genetic privacy experts say it's theoretically possible for users to be traced back to their genetic data.

不過，一些基因隱私專家表示，理論上用戶的基因數據有可能被追蹤到。

In general, these privacy risks related to at-home genetic tests are new, but they're getting a ton of attention right now because of the 23andMe spiral.

總的來說，這些與家庭基因測試有關的隱私風險是新出現的，但由於 23andMe 的漩渦，它們現在得到了大量關注。

What troubles me most is if the company goes under or gets sold, who will own all that genetic data?

最讓我頭疼的是，如果公司倒閉或被出售，誰將擁有這些基因數據？

Their user agreement states that if the company is acquired, user data will likely go to the company that buys it.

他們的用戶協議規定，如果公司被收購，用戶數據很可能會流向收購公司。

And if that happened, the new owner could keep their current privacy policies or it could change them.

如果出現這種情況，新的所有者可以保留其當前的隱私政策，也可以對其進行修改。

Right now, privacy laws in about 12 states would require customers to give consent before 23andMe could transfer their data to a new owner, but most states don't go that far and there's no federal law to that effect.

目前，約有 12 個州的隱私法要求客戶在 23andMe 將其數據轉移給新主人之前必須先徵得同意，但大多數州都沒有這麼做，也沒有相關的聯邦法律。

那麼，23andMe 用戶到底能做些什麼呢？

For starters, remove consent from all types of third-party sharing.

首先，取消所有類型的第三方共享同意。

The other critical step is deleting your data ASAP.

另一個關鍵步驟是儘快刪除數據。

The website actually has instructions on how to do it.

網站上確實有如何操作的說明。

One caveat though, 23andMe outsources its genotyping to labs and they are obligated to keep customer's genetic info as raw data with their sex and date of birth for a couple of years before deleting it so it's not instant.

但有一點需要注意，23andMe 將基因分型工作外包給實驗室，他們有義務將客戶的基因資訊作為原始數據與性別和出生日期一起保存幾年，然後再刪除，所以這並不是即時的。

My advice here, before you share genetic data with any company, think really carefully if it's worth the potential risks, review all user agreements and consent policies with a magnifying glass and consider asking your doctor if a proper geneticist referral is better for you.

我的建議是，在與任何公司共享基因數據之前，請仔細考慮是否值得冒潛在風險，用放大鏡查看所有用戶協議和同意政策，並考慮詢問醫生是否由遺傳學家轉介更適合你。

Your DNA is the most personal data you have.

您的 DNA 是您擁有的最個人化的數據。

Why do we get hiccups and how do you get rid of them?

我們為什麼會打嗝，如何擺脫打嗝？

 Click here to learn that and as always, stay happy and healthy.

點擊此處瞭解詳情，並一如既往地保持健康快樂。