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Home Genetic Testing - Should You?

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traumaRUs has 27 years experience as a MSN, APRN and works as a Asst Community Manager @ allnurses.

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Most of us have heard of 23andMe, Ancestry.com and other DNA-discovery products. Have you tried it? What did you find out? What should we do with all this info?

Home Genetic Testing - Should You?

It’s becoming increasingly more popular for people to do home DNA genetic testing. Many reasons account for this with one of the major ones being discovery of your personal risk for a disease.

Direct to consumer DNA testing

The popularity of direct to consumer or DTC genetic testing is surging, “with the global market valued at more than $70 million in 2015, according to one report; that’s up from roughly $50 million in 2014. One company, 23andMe, has even gained Food and Drug Administration approval to provide information regarding whether you're a genetic carrier for some disorders, including sickle cell anemia.” How is all this information developed?

What is whole genome sequencing?

Whole genome sequencing involves the rapid sequencing of large amounts of DNA. Frederick Sanger was a British biochemist who won the Nobel Prize in Chemistry. In 1980 he shared half of the chemistry prize "for contributions concerning the determination of base sequences in nucleic acids". The other half was awarded to Paul Berg for his fundamental studies of the biochemistry of nucleic acids, with particular regard to recombinant DNA. However, although it has been proven to be very complete, it is also extremely expensive as well as time-consuming.

How are direct to consumer DNA testing regulated?

So, the history of DTC genetic testing goes back to the early 2000’s when several companies began to offer consumers the opportunity to find out specific risks for certain diseases. However, in 2010, the Federal Drug Administration sent out letters to the top four companies informing them that their products “constituted medical devices that had not been submitted to the FDA for approval. On July 22 of that year, the House Committee on Commerce and Energy convened a hearing on DTC testing. In his opening statement, Representative Henry A. Waxman stated that government scrutiny was necessary to “ensure the public is protected against exaggerated claims, abusive marketing, and practices that threaten individual health and safety.” In November 2013, the FDA went a step further and sent “cease and desist” letters to several DTC genetic testing companies, ordering them to immediately discontinue marketing and sales of their health-related testing services until they received FDA authorization for these devices.”

In 2017, 23andMe was approved by the FDA as an approved medical device. Here is what the current scenery is regarding DTC genetic testing:

  • FDA exercises regulatory discretion
  • Increasing medical integration
  • Analytical validation required
  • Panel content regulated by risk level
  • User comprehension validation required
  • Greater separation between health and entertainment

Should you invest in a DTC genetic test? Or go to your medical provider?

Curiosity or concern for the possibility of a certain disease are two of the most frequently used reasons to pursue DTC genetic testing? However, should you go to your medical provider instead? Medically ordered genetic testing does come with some advantages:

  • Quality assurance
  • Medically provided guidance as to your risk factors
  • Once results are available, you have more medical guidance as to the importance of the results
  • Privacy with regards to the results

Some of the advantages of DTC genetic testing:

  • Cheaper than medically ordered testing
  • Can be done in your own home
  • Faster results

However, what is done with the results? Medically ordered genetic testing is covered by HIPAA. So, what about DTC testing?  “The Genetic Information Nondiscrimination Act (GINA) was signed into law on May 21, 2008 and became fully effective November 21, 2009. GINA prohibits discrimination by health insurance companies and employers based on “genetic information.” In this case, “genetic information” is defined as: your genetic test results; your relatives’ genetic test results (up to and including fourth degree relatives); and/or information about family history of any disease or disorder. Information about your participation in research that includes genetic testing, counseling, or education is also protected.”

What’s in the future?

The future is wide open to developing more DTC genetic testing as more and more companies jump on the wagon of people making their own decisions about genetic testing. Is it right for you?

References:

Journal of Law Medical Ethics: Direct to Consumer Genetic Testing: Is it the Practice of Medicine?

Mayo Clinic Proceedings: Direct to Consumer Testing 2.0: Emerging Models of Direct to Consumer Genetic Testing

National Society of Genetic Counselors

US National Library of Medicine; What are Whole Exome Sequencing and Whole Genome Sequencing?

Wikipedia: Who is Frederick Sanger?

Why Should You Think Twice About At-Home Genetic Testing

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14 yrs RN exp, ER, ICU, pre-hospital RN, 13+ years exp Nephrology APRN, allnurses Asst Community Manager. Please let me know what I can do to make your experience more enjoyable.

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Emergent has 25 years experience and works as a Emergency Room RN.

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I'm an adoptee and had found my mother's side years ago by hiring a detective. She was already dead and my father's identity died with her.

I did ancestry  . Com and was shocked to find my father's side of the family within a month.  I now have a wonderful half sister and answers to a lifelong mystery. I'm almost a carbon copy of my father in looks and mannerisms, and apparently take after his mother quite a bit in personality and hobbies.

I haven't done the medical side of DNA testing. 

 

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OldDude works as a School Nurse.

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3 minutes ago, Emergent said:

I'm an adoptee and had found my mother's side years ago by hiring a detective. She was already dead and my father's identity died with her.

I did ancestry  . Com and was shocked to find my father's side of the family within a month.  I now have a wonderful half sister and answers to a lifelong mystery. I'm almost a carbon copy of my father in looks and mannerisms, and apparently take after his mother quite a bit in personality and hobbies.

I haven't done the medical side of DNA testing. 

 

Heart warming outcome! Congratulations for seeking that out. Hopefully that has provided you some comfort and closure of your ancestry.

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Emergent has 25 years experience and works as a Emergency Room RN.

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4 minutes ago, OldDude said:

Heart warming outcome! Congratulations for seeking that out. Hopefully that has provided you some comfort and closure of your ancestry.

It most certainly did, especially since I take after this side of my family more. 

I recommend everyone do this, it's fascinating. They study population groups and can pinpoint the parts if, in my case Europe, where your ancestors came from. They also study migration patterns here in the USA. They told me that I had early Mormon pioneers in my lineage. I verified this, my great, great, great grandparents are buried in Provo Utah and migrated there in the early 1800s.

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WestCoastSunRN has 20 years experience as a BSN and works as a CCRN.

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I think the ancestry part is fun.  I'm not so sure about the genetic pathology component -- even when done medically (I definitely see pros, but there are undeniable cons as well).  I struggle because I'm all for consumer empowerment, but am not at all convinced at-home genetic pathology testing is necessarily going to lead to improved outcomes.

We are experiencing a mental health crisis with soaring suicide rates among kids and young adults.  Somehow people are not getting the support/guidance they need.  I think genetic information is something that requires support and guidance.

Edited by WestCoastSunRN

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Emergent has 25 years experience and works as a Emergency Room RN.

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Another neat thing is doggy DNA testing. I had both of my mutts done. Good 21st century fun!

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emmjayy is a ASN, RN and works as a Medical-Surgical ICU Nurse.

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Absolutely not. I remember that Facebook started out as good old fun and now it's just a data mining operation that sells your personal information to the highest bidder. I don't fancy having my genetic information stored and sold to whoever, which is what is definitely going to happen with these DNA testing companies. 

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Genetic testing?

 

I wonder if the Native American population will result in a net-gain.

 

Had to say it. I couldn't resist.

Edited by KonichiwaRN

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3 hours ago, WestCoastSunRN said:

Somehow people are not getting the support/guidance they need.

How about good old fashioned parenting? That seems to work, is time proven, and multi-cultural that spans across nations.

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Daisy4RN has 20 years experience.

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1 hour ago, emmjayy said:

Absolutely not. I remember that Facebook started out as good old fun and now it's just a data mining operation that sells your personal information to the highest bidder. I don't fancy having my genetic information stored and sold to whoever, which is what is definitely going to happen with these DNA testing companies. 

My sister and I have dabbled a little on one of those sites to find ancestors etc. but like you I draw the line at DNA. I dont trust those companies to begin with plus I believe if you read the fine print you are giving up your rights to privacy of said DNA.

That said, if I had a specific reason then I might consider (but it would have to be a very good reason).

 

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Daisy4RN has 20 years experience.

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5 hours ago, Emergent said:

I'm an adoptee and had found my mother's side years ago by hiring a detective. She was already dead and my father's identity died with her.

I did ancestry  . Com and was shocked to find my father's side of the family within a month.  I now have a wonderful half sister and answers to a lifelong mystery. I'm almost a carbon copy of my father in looks and mannerisms, and apparently take after his mother quite a bit in personality and hobbies.

I haven't done the medical side of DNA testing. 

 

I am happy for you that you found family!!

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Emergent has 25 years experience and works as a Emergency Room RN.

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2 hours ago, emmjayy said:

Absolutely not. I remember that Facebook started out as good old fun and now it's just a data mining operation that sells your personal information to the highest bidder. I don't fancy having my genetic information stored and sold to whoever, which is what is definitely going to happen with these DNA testing companies. 

Those concerns held me back for some time. But, think of it, your DNA can be gathered from a coffee mug. And, who really cares? We're not that important. 

Think about our ancestors, living in small villages. They had far less privacy than we do now. The Sioux had an etiquette rule that you weren't supposed to look over to someone else's teepee. I'll bet the bank that curious neighbors violated that regularly. 

So, I finally decided, heck, I'll be dead in 30 or 40 years, I think this would be interesting. And it was.

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