23andMe - What happens when your data is your DNA?
This is part 1 of a science fiction/know your rights series of blog posts. The following is a true story. For this post I want you to use your creativity and write a paragraph about what you think happens to Sarah next. It can be anything you want based upon the information you now have about Sarah.
Sarah hovered over the mailbox, envelope in hand. She knew as soon as she mailed off her DNA sample, there’d be no turning back. She ran through the information she looked up on 23andMe’s website one more time: the privacy policy, the research parameters, the option to learn about potential health risks, the warning that the findings could have a dramatic impact on her life.
She paused, instinctively retracting her arm from the mailbox opening. Would she live to regret this choice? What could she learn about her family, herself that she may not want to know? How safe did she really feel giving her genetic information away to be studied, shared with others, or even experimented with?
Thinking back to her sign-up experience, Sarah suddenly worried about the massive amount of personally identifiable information she already handed over to the company. With a background in IT, she knew what a juicy target hers and other customers’ data would be for a potential hacker. Realistically, how safe was her data from a potential breach? She tried to recall the specifics of the EULA, but the wall of legalese text melted before her memory.
Pivoting on her heel, Sarah began to turn away from the mailbox when she remembered just why she wanted to sign up for genetic testing in the first place. She was compelled to learn about her own health history after finding out she had a rare genetic disorder, Ehlers-Danlos syndrome, and wanted to present her DNA for the purpose of further research. In addition, she was on a mission to find her mother’s father. She had a vague idea of who he was, but no clue how to track him down, and believed DNA testing could lead her in the right direction.
Sarah closed her eyes and pictured her mother’s face when she told her she found her dad. With renewed conviction, she dropped the envelope in the mailbox. It was done.
https://blog.malwarebytes.com/101/2018/11/dna-testing-kit-companies-really-data/
Sarah hovered over the mailbox, envelope in hand. She knew as soon as she mailed off her DNA sample, there’d be no turning back. She ran through the information she looked up on 23andMe’s website one more time: the privacy policy, the research parameters, the option to learn about potential health risks, the warning that the findings could have a dramatic impact on her life.
She paused, instinctively retracting her arm from the mailbox opening. Would she live to regret this choice? What could she learn about her family, herself that she may not want to know? How safe did she really feel giving her genetic information away to be studied, shared with others, or even experimented with?
Thinking back to her sign-up experience, Sarah suddenly worried about the massive amount of personally identifiable information she already handed over to the company. With a background in IT, she knew what a juicy target hers and other customers’ data would be for a potential hacker. Realistically, how safe was her data from a potential breach? She tried to recall the specifics of the EULA, but the wall of legalese text melted before her memory.
Pivoting on her heel, Sarah began to turn away from the mailbox when she remembered just why she wanted to sign up for genetic testing in the first place. She was compelled to learn about her own health history after finding out she had a rare genetic disorder, Ehlers-Danlos syndrome, and wanted to present her DNA for the purpose of further research. In addition, she was on a mission to find her mother’s father. She had a vague idea of who he was, but no clue how to track him down, and believed DNA testing could lead her in the right direction.
Sarah closed her eyes and pictured her mother’s face when she told her she found her dad. With renewed conviction, she dropped the envelope in the mailbox. It was done.
https://blog.malwarebytes.com/101/2018/11/dna-testing-kit-companies-really-data/
The envelope was sent off and for weeks Sarah began to worry if she made the right choice. Would this one mistake ruin her life? Would a hacker or mysterious person come for and her family? Would this envelope be the end of her? Sarah was just being paranoid(this is what happens when you watch t.v for 8 hours straight). Soon it was the day she waiting for, after many weeks of waiting Sarah finally got the results from the people at 23 and me. Sarah was filled with excitement as she read the note left in this new envelope that answered all of her questions. Though this may seem like the whole story ... it's not. While Sarah was thrilled to gain all this new information… the people on the other side(23 and me) now had Sarah’s data in their hands and could use it at their will.
ReplyDeleteAbout a month later, she received her test results. She found out many interesting facts about her family: for example, Ehlers-Danlos syndrome, her rare disease, actually does run in her family. However, a few days after receiving the results, her email account had been hacked. She lost $250 from purchases she didn't make and lost many important work emails. She was devastated, and knew that although she found out many interesting facts about her family, being scammed like that wasn't worth it. She knew she should have thought deeper into the fact that her information could easily get stolen and used for purposes of ill-intention. The worst part was, she never found out where her mother's father was. Sarah has a lot of work to do to get her email back, but she isn't 100% sure if she ever will. Hopefully, something like this never happens to you.
ReplyDeleteThe next few days, all she could think of was the sample, would her genetic information be safe. All she wanted was to find out more about her ancestors but now she is getting worried that her confidential's wont be so personal anymore. At last; six weeks later, a letter comes in the mail. "The genetic testing has proven you are 30% German, 19% Brazilian, 51% Irish." So far, nothing that hints at her identity being kept. However, she was still paranoid about what the future may hold. People of high authority are constantly keeping things from us, what if there's something I don't know about DNA testing that would've swayed my decision of putting envelope in the mailbox?
ReplyDeleteFor the next few weeks, Sarah was worried about this decision she made. She kept questioning herself over and over again. She did not know if this was a mistake or not. Her results came back and she found out about her rare genetic disorder, Ehlers-Danlos syndrome. When she got those results back, she researched more into her disorder and found out more about it. While researching, Sarah realized that her emails looked different so she assumed that she has been hacked. She worried constantly but she knew that there was nothing she can do. She deleted as much information as she could and realized that next time she has to be more aware and careful on the computer or in general.
ReplyDeleteDays went by and Sarah continued to worry about whether giving away her genetic information was a good decision. She struggled with the pros and cons, but just focused on how happy her mother would be if she found her dad. A few more days passed and there it was, the envelope from 23 and me sitting in her mailbox. She opened it with worry and excitement. She read it and learned many things about her background. She discovered who her dad was and figured out a way to track him down. When everything seemed to be going her way, she got a call from the bank. She was stripped of all the money in her account. She was still stable money wise, but that stolen amount forced her to work night shifts for the next 2 months to gain the money back. She regretted sending the envelope because she knew a hacker from 23 and me was responsible, but she was glad to have her dad back.
ReplyDeleteAfter Sarah had decided to put the envelope in the mailbox, she started to regret her decision. She asked herself "why did i do that. I could put my life at danger?" Then she realized that there is good to putting the envelope in the mailbox. It could potentially be the reason she found her dad. After months of waiting, she finally got the envelope. She found out so many things about herself that she did not know. She thought to herself "this really was a good thing. I'm so happy I did it." Although this experience ended greatly, Sarah was still worried about her information. She does not want to get hacked or for 23andMe to have her information. I guess that she will worry about that her entire life.
ReplyDeleteShe went back inside, contemplating if she had made the right decision. Six weeks later, on a Saturday afternoon while she was watching t.v., the mailman delivered knocked on her door with the results. She had been waiting for this moment for the longest time and it finally arrived. She was nervous at first, to open the package, but she finally did and she was shocked. She saw that on her father's side, there was a single trace of Ehlers-Danlos syndrome and it must have been a hidden gene until it appeared in Sarah. She was also very interested to learn that her mother's side was mixed with some Native American. Fascinated by her discoveries, she forgot about her worries and realized that there was a very low chance of her getting hacked. Later that day, she shared her discoveries with her parents, as they were surprised as well!
ReplyDeleteA few weeks later Sarah reexamined her choice of sending the envelope, for she did not know what to expect, what information would the envelope contain. She did this whole so that she could learn more about any other health risks she was prone to besides Ehlers-Danlos syndrome. She also wanted to find out about her personal genetic information. Sarah was not sure if she could trust the researchers dealing with her personal information. Days went by and she finally held the envelope in her hand, she was not sure if she wanted to open it. Later she decided to open it for it was the only thing she could think about. She read through the sheet of paper frantically over and over again. She was excited to finally have the information that she so wanted, and it would be useful
ReplyDeletelater. She could not help think that people she did not know had her personal information, but what worried her the most was that they would always have it. She decided that next time she would not give her personal contacts/information to people she did not trust.
After a few weeks Sarah receives a response from the website she used. The results relay information about where the Ehlers-Danlos syndrome came from, gives her some information about where her family is from, and even lists people she could potentially be related to. According to the results, the Ehlers-Danlos syndrome could be traced back paternally in her family. It tells her that her family is mainly European and that they've been in America for a long time. Finally, among the list of people she could potentially be related to, there is one man, the one who's most closely related to her, who just happens to be related to her via her mother. She makes plans to contact him, hoping to surprise her mother.
ReplyDeleteMonths had passed and Sarah still had not received her response from 23andMe. She began to worry. Suddenly a government official knocked on Sarah's door. As Sarah opens the door, a man with a glass eye and a FBI badge is standing. "Sarah Laurence?" The man asked. "Yes? Do you have my 23andMe results?" "Yes, I am Mr. SupermanDiscoverer can I come in and talk to you?" Sarah was hesitant to allow this man into her house but she was eager to know if there was future research done. As Mr. SupermanDiscoverer informed Sarah that she carried rare genes on her father's side, rare genes that carry super powers such as telepathy and psychokinesis, Sarah's Ehlers-Danlos syndrome was the least of her worries.
ReplyDeleteThe next couple of days Sarah was having mixed emotions about her sending in her dna into a company’s hands. She had her doubts yet she had faith that she made the right choice and should would later be proud of her decision. A couple of weeks after Sarah sent her dna to 23andMe, she later received a notification on her phone stating that her test scores have been delivered. Of course the recent news had brought her great satisfaction considering she has been curious about her past for a very very long time. Sarah told her mother she was going outside to retrieve the scores from the mailbox and her mother waited by the door. Sarah removed the envelope from the mailbox and ran back inside to open it and see what she had always been waiting for. Once she opened the letter and read through over and over again, Sarah found out that her grandfather, Bill Bates, was a direct descendent of Abraham Lincoln. Her mother and her were extremely excited about the news they had found, especially to think that they could be related to the president. From this day on Sarah still remembers the day she found out about her ancestry. Sarah realized she would forever be in 23andMe’s dept for opening her mind and expanding her knowledge about her family tree.
ReplyDeleteSarah walked home, thinking about it the whole time. She walked into her gate and she knew she made the wrong choice. She knew that even though she so very badly wanted to learn about her ancestry, she didn't want her data on file and accessible to anyone. Sarah, on her way back to the mailbox, saw the mailman gathering the letters. She began to run. Just as the mailman was about to drive off, she caught him. She asked to go through the mail to find her letter. But the bag of mail was huge, there was no way she was going to find it. Sarah had to try. She looked for about 15 minutes when the mailman told her to speed up the process because he had to go. After an extra five minutes, she found it and she was relieved. She walked back home knowing that she was not at risk of having her information on file.
ReplyDeleteAfter sending off the letter, Sarah continued to worry over the next few days. As the weeks passed she seemed to have forgotten about it, but then one day in the mail she got a letter from 23andMe, and as she looked at the letter she seemed to be excited and worried at the same time. In the letter she found out a lot about her family DNA. She also found out that she had a marker in her DNA that indicates that she has a risk of getting pancreatic cancer and it ran in her family. This was interesting because no one in her family, that she knows of, has had pancreatic cancer, which means that she probably got it from her mother's father, her grandfather. Sarah was so excited about the 23andMe letter and all that she learned from it, but still in the back of her head she had the same worries as before.
ReplyDeleteFor weeks to follow, Sarah hoped and stressed that her genetic information was sent where it was intended. One Saturday morning, she opened her mailbox and received her results regarding her rare genetic disorder and where her family was from. She learned that in fact Ehlers-Danlos syndrome was hereditary and that her mother's side of the family was from South America. Just when Sarah stopped worrying about whether her genetic information was misused, she received a call from her credit card company notifying her that $900 was deducted from her account that morning. Her heart began to race and immediately she regretted letting such confidential information out of her reach.
ReplyDeleteAfter a few days since Sarah sent the letter, she kept thinking about it whether she made a right or wrong choice. Then the day after she received the letter in the mail from 23 and me. She found out that her father DNA indicates that she has a risk of getting pancreatic cancer and it ran in her family.This made it very interesting to her because her mother nor any other family members really talked to her about her father, since they had a divorced a year before she was born. After receiving and reading the letter she was upset and wanted to meet her father so she went looking for him that weekend.
ReplyDeleteThe next couple of days Sarah was having mixed emotions about her sending in her dna into a company’s hands. She had her doubts yet she had faith that she made the right choice and should would later be proud of her decision. A couple of weeks after Sarah sent her dna to 23andMe, she later received a notification on her phone stating that her test scores have been delivered. Of course the recent news had brought her great satisfaction considering she has been curious about her past for a very very long time. Sarah told her mother she was going outside to retrieve the scores from the mailbox and her mother waited by the door. Sarah removed the envelope from the mailbox and ran back inside to open it and see what she had always been waiting for. Once she opened the letter and read through over and over again, Sarah found out that her grandfather, Bill Bates, was a direct descendent of Abraham Lincoln. Her mother and her were extremely excited about the news they had found, especially to think that they could be related to the president. From this day on Sarah still remembers the day she found out about her ancestry. Sarah realized she would forever be in debt to 23andMe for opening her mind and expanding her knowledge about her family tree.
ReplyDelete