23andMe, Inc. Granted First FDA Authorization to Market Direct-to-Consumer Genetic Health Risk Reports

[circular]

I never looked closely at the original, but I prefer Stavia's. These are a bit cumbersome and awkward. How 'bout:

Before you test for apoe4...

or

To test apoe4 or not to test apoe4?

or

Checking Your ApoE4 Status: Pros and Cons

(fixing the apoe4 style, initial caps style to coincide with website etc)

[circular]

Personally, while the life changing aspect has been great for me, Inwindernif it might be better to keep the lead in neutral. I like the question format because people need to think it through with a blank slate in the context of their own lives. If the lead in is too suggestive one way or another it could filter the internal responses to a degree in some rather than encourage them to take a detached look at all the nuances.

[Julie G]

Good idea, Circ. We definitely want to be positive. Of course, "life changing" can be good or bad. The first sentence on that page has a fairly positive slant:

While knowledge that you carry the ε4 variant of the APOE gene can provide an opportunity to be proactive about your health, there are some important considerations to take into account BEFORE you get tested.

Do you think we've missed the mark? Please feel free to suggest edits for the Welcome page lead-in. TIA.

[Its Me]

I'm one of the ones you thought might show up after the change in 23andMe. Some thoughts.

23andMe simply gave me new reports on the genetic data in April (I had the right chip previously processed). There is a button to push asking if you want to see the data. But frankly, I think many can't resist that and it will haunt them until they click to read it whether they are prepared for any bad news or not. It is like having ice cream in your freezer. You know it is there and it keeps calling your name until you eat it - the entire box. Which is why I do not buy ice cream. I know I have no will power.

All 23andMe said is that I have 1 copy of e4. I also had done Promethease and learned I am 3,4. This has risk for AD and also heart disease and weight gain. I am not really concerned, as others may also see that other factors reduce risk. I don't have other APOE risks like heart disease, no known AD in my family, I also have none of the key risks like high cholesterol, high blood pressure, diabetes, obesity, and sleep apnea. Life style has an influence on these risks - good diet, exercise, sleep, etc.
http://www.alzheimers.net/2013-09-20/hi ... lzheimers/

Cholesterol has a big tie to APOE and the brain. Wiki indicates it seems those with low total cholesterol have a low incidence of AD. "Nigerian blacks have the highest observed frequency of the APO E*4 allele in world populations."[48] But AD is rare among them.[48][49] There is growing evidence that suggests that this may be due to their low cholesterol levels.

Also, I learned how to use Promethease with this video. You can dig deeper for more info.
https://www.youtube.com/watch?v=xwendzsqtkE

[Its Me]

I should also add this regarding forum concerns about Prometheaus and getting genetic knowledge.

Yes, I learned I was AEPO e3,4. But I also learned I have none of the key risks, and feel better the more I read up.

And with a different SNP I also learned I have half the risk for endrometrial cancer - great news as I was just biopsied due to thickening of this to test for cancer - the biopsy turned out just fine. So this eases my mind. Along with this for the same SNP- "This SNP is a change in Estrogen Receptor 1 (alpha). It also lowers risk of cognitive impairment in aging women" I'm also hopeful that this change in an Estrogen Receptor means less risks all around for female cancers. At my age, 70, that is very good news.

I also learned I had risk for Afib - which I was diagnosed with last summer (I'm still debating that with doctors as I had low potassium likely caused by a corticosteriod shot just before which can lower potassium and is considered a possible trigger for afib).

But most importantly, it let me know that caffine would not cause small breasts. And I'm unlikely to have bad breath.

[Stavia]

Hi Its Me and welcome. I like your sense of humour

[Julie G]

AlzForum recently did a story covering 23andMe’s decision to reveal ApoE4 status. They reached out to some very wise sources for comment

Genetic Wild West: 23andMe Raw Data Contains 75 Alzheimer’s Mutations
http://www.alzforum.org/news/community- ... -mutations

Other ApoE4 carriers see it differently. Julie Gregory, 55, of Long Beach, Indiana, found out in 2012 that she carried two copies of ApoE4 using 23andMe. At that time, the company had yet to offer genetic health risk reports that explained the results. Shaken and confused, Gregory started commiserating with hundreds of other carriers on 23andMe’s customer forums. Those interactions motivated her to form the website ApoE4.Info, where ApoE4 carriers support each other and discuss the latest research. “Although I was initially traumatized, knowing my status has been a good thing for me,” she said. “Knowledge is power.”

Gregory told Alzforum that while genetic pre-counseling would have been helpful, she doubts most people use it. “It’s great advice, but I’ve never seen anyone follow it,” she said. More important is that people have a place to turn after finding out their results, and that they feel motivated to make lifestyle changes to counter their genetic risk, she said. Gregory added that while she knows people who suffered severe psychological harm after learning their genotype, including PTSD, they tend to be the exception.

Gregory’s observation has a basis in research. In a recent study, only 4 percent of DTC genetic testing customers sought counseling (Koeller et al., 2017). Scott Roberts of the University of Michigan in Ann Arbor headed the study, which surveyed more than 1,000 customers of 23andMe and Pathway Genomics, another genetic testing company, in 2012, before 23andMe ran afoul of the FDA. The few participants who did use counseling tended to have had prior experience with genetic counselors, were highly educated, more affluent, and younger. Far more people shared their genetic testing information with primary care providers than with genetic counselors. This deference to physicians could be a case of “first-stop shopping,” Roberts told Alzforum, or a consequence of the dearth of available genetic counselors. He added that many genetic counselors have long waiting lists; they also tend to give DTC customers low priority because they consider at-home tests less urgent than those ordered by a doctor.

[circular]

Great! This gives me an idea. Maybe there is a hard core genetic counseling outfit that could construct a course specifically tailored to genetic counseling around apoe4. People like our IFM coaches here could take it as part of their training. They wouldn't need an entire background in genetics and genetic counseling, but more of a certification type thing for apoe4 counseling.

[Jan]

I'd sign up.

[Gilgamesh]

Julie, wonderful!

Carriers are referred [from SNPedia] to Julie Gregory’s ApoE.Info website for support.

I see the SNPedia link to our wiki is bad. Let me know
whne/if the board thinks we can "go live" (or live-ish) and I can fix the link.

xo
G