It’s a difficult time to be in the personal genetics industry, a point underscored by the recent financial turmoil at 23andMe. 23andMe is considered the biggest player in the direct-to-consumer (DTC) genetic testing market. Their plight raises important questions, not just about the safety and privacy of individual genetic information. This article explores what 23andMe’s fate could mean for the future. It tells you what will happen to your data and the cool new inventions that might come because of it. About OverTraders.com OverTraders.com helps today’s traders and investors with the critical information they need to successfully navigate today’s complex markets. This article serves as your training manual as you navigate the mysterious world of personal data in the genetics space.
The Impact of 23andMe's Potential Collapse on Your Data
The biggest issue of all for 23andMe customers is their genetic data. In the event of bankruptcy or an acquisition, sensitive private consumer data would likely find its way into the hands of a new owner. This can create an enormous vulnerability for your data. 23andMe guarantees that current information privacy agreements will remain in place unless users consent to updated terms. The new news about the company’s uncertain future is leaving users with more questions than answers. The concern that under a new owner, data privacy may not be a priority is a legitimate concern.
In short, selling personal data as part of a bankruptcy case is not unheard of — but this is where the public fear comes into play. Customers had placed their trust in 23andMe with their genetic information. They did so under the assumption that it would be used for research or to provide information about their ancestry and health. We get that it’s scary to imagine all this data being used without your permission. It’s worse still that it might be released to third parties.
Unfortunately, this scenario underscores the need for much more rigorous regulations and safeguards to protect individuals’ genetic information. The current legal framework may not be sufficient to address the unique challenges posed by the direct-to-consumer genetic testing industry. Therefore, it’s critical to know 23andMe’s data practices and where you can take steps to protect your data.
Understanding 23andMe's Data Policies
23andMe’s policies on data use are detailed in its Terms of Service and Privacy Statement. These privacy policies outline the ways a company collects, uses, and shares their customers’ data. Users need to be able to read these policies to know what rights they have and what they can’t do. The policies address the full life cycle of data use, from data security controls to data sharing policies and practices to data deletion protocols.
The company collects two main types of information: Personal Information and Genetic Information. Personal Information means an individual’s name, address, phone number, and other identifying demographic information. Genetic Information means the information obtained from the testing of your DNA sample. Consumers need to know how marketing and research data are collected, employed, and safeguarded by 23andMe.
23andMe says it can provide research partners with aggregate, anonymized data. Individual genetic data is pooled together and shared with other users. This data is subsequently de-identified to remove all personally identifiable information. Even anonymized data can in many instances be re-identified, creating dangerous privacy risks.
What Happens to Your Genetic Information?
Customers have the ability to remove their information from 23andMe’s system. Users will be able to log into their online accounts to begin the deletion process. Or, they could start it by using the Permission Slip app. Once you successfully select the “Permanently Delete Data” option, 23andMe will email you to confirm that you’d like to proceed with the deletion request. The deletion process takes 45 days to fully process.
It's crucial to understand that deleting your data may not completely erase it from all of 23andMe's systems. Furthermore, the company can still keep certain data for legal or regulatory obligations. We look forward to seeing you out there! If outside researchers have already accessed your data to conduct research, then data retrieval may not be feasible.
The recent, uncertain fate of 23andMe has resurrected calls for tighter regulations to safeguard consumers’ personal and genetic information. Such an approach is outlined in a recent discussion paper released by the New England Journal of Medicine which proposes robust data privacy and security protections. These protections would cover all personal data—including genetic information—and would apply in bankruptcy proceedings.
Another possible antidote is to expand the enforcement of current statutes. For instance, rather than hammer out a new privacy law, we might extend HIPAA or GINA to cover companies such as 23andMe. Today, HIPAA protects the privacy of medical information maintained by healthcare providers and health plans. GINA forbids discrimination in employment and health insurance based on genetic information. Extending these laws would offer much stronger protection for the privacy of consumers’ genetic data.
There are resources and best practice recommendations from groups such as Australian Genomics that provide valuable support. These guidelines serve as a best practice guide and framework for data sharing and governance within the context of genomics that promotes social equity. For example, they cover topics like data protection, data sharing, and data privacy. By adhering to these principles outlined here, companies can help ensure they are doing so in an ethical, transparent and responsible way.
Related Topics of Interest
The issue with 23andMe raises the larger question of data privacy and security during a data-centric time period. With every new technological development, people are creating more data than ever before. Data that is increasingly being harvested, monetized, manipulated, and weaponized by companies and governments. People need to be aware of their data rights. They must be empowered to do more than rely on companies. They must actively take steps to protect their personal information.
How World War I Veterans Influenced the Civil Rights Movement
While all World War I veterans returned to extreme challenges, African American veterans, in particular, faced additional hardships. These challenges are closely tied to the current struggle for data privacy. These veterans came home to a country that with few exceptions treated them as though they had not fought and sacrificed everything to secure the freedoms they’d earned overseas. Their experiences helped inspire the Civil Rights Movement, which fought to guarantee equal rights and protections under the law for all Americans.
The present discussion about data privacy surrounds the idea that people should be empowered to decide what happens to their data. Its purpose is to protect their rights in the digital space. The Civil Rights Movement’s long and valiant struggle for the elimination of discriminatory practices. Today, the data privacy movement is standing up to the rampant collection and usage of personal information without consent. Our fight for data privacy is the ongoing fight for individual rights and freedoms.
The approach that movement leaders took within the Civil Rights Movement offers important guidance for today’s data privacy debate. One of the most important lessons we’ve learned from this work is that collective action is critical. The Civil Rights Movement succeeded because of the interconnected work of activists, organizations, and ordinary citizens. Similarly, the data privacy movement requires that level of engagement from all of us. People have to mobilize for a future with better transparency and accountability from businesses collecting and using their data.
Europe's Defense Against a Nuclear Threat from Russia
While the geopolitical tides continue to change, the prospect of nuclear warfare is very real. Europe now has an incredibly difficult challenge to defend against an increasingly likely Russian nuclear threat. This is the issue that brings together military strategy, diplomacy, and international relations. This might feel like a tangential issue to the world of data privacy. It does reset expectations regarding the need for security and resilience in the face of known, proven threats.
Europe now needs to prepare to ensure that they can retaliate to any nuclear strike. Concurrently, people and institutions must do more to protect their data from cyberattacks and data breaches. Data security, the second component of data privacy, is critical to protecting data privacy. It requires a comprehensive strategy that includes technological protections, as well as policies and practices.
Even the threat of a nuclear attack can’t convince world leaders to work together accurately international cooperation, such common cause. Preventing nuclear proliferation is a goal that countries should come together to accomplish to secure peace and security around the world. They must work together on addressing data privacy and security challenges. Whether we recognize it or not, data crosses borders each minute. International cooperation is essential to ensure protection of that data, regardless of where it is stored or processed.
The future of personal genetics is still very much an open question. Data privacy and security are sure to be major concerns going forward. As we enter an era of advanced technology and greater personal data collection, it’s more important than ever to remain vigilant. They need to go back to pushing for more transparency and accountability from industries that manage our data. OverTraders.com will continue to monitor these exciting developments. We are committed to providing traders and investors with the tools and information they need to succeed in today’s financial markets.
