IMPORTANT: Change to our Community Guidelines!

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Julie G
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IMPORTANT: Change to our Community Guidelines!

Post by Julie G »

Friends, I vividly recall the launch of our site back in late October of 2013. So many people from all over the world, who were just learning about their ApoE4 status through 23andMe, were eagerly embracing the concept of a community based around our risky genetic status. We were all trying to figure out what, if anything, we could do to protect our health. Over time, through our collaboration, we amassed hundreds of pages of discussion. Ultimately, there was interest in branching off from the 23andMe forums in an effort to better organize our information. So Ski, Gilgamesh, and I, with a flurry of group emails and great excitement, hastily cobbled together our website and launched into the unknown. Indeed, very little was known in those early days about how to translate the science into actual strategies that might prevent, delay or even remediate symptoms of cognitive decline and heart disease for ApoE4 carriers. We wanted to create a platform in which real learning could occur and the science could be debated in a respectful manner. Our community has grown in leaps and bounds since our beginning and our board of directors has decided that it’s time to refresh our original Community Guidelines that have governed acceptable behavior in our community until now.

Marc has distilled our original intent into a beautiful new document that embodies overarching positive community values that have defined our community from the start- curiosity, respect, humility, kindness, and trust. Our board of directors has voted unanimously to approve the new document. Please take the time to read the new document below. As always, we’d appreciate your feedback and questions.

Community Guidelines

Please refer to our Terms of Use for information about your legal relationship with ApoE4.Info, Inc. and this Site. These Guidelines provide additional detail about the social environment that we strive to maintain in our discussions on the ApoE4.Info Forums.

The Forums have attracted a special mix of participants including lay researchers, patients, caregivers, clinicians, and scientists. In order to help us support and learn from one another, we moderate the Forums according to these values:

Curiosity. Our understanding of the APOE-ε4 allele is evolving. We are skeptical of all ideas including the conventional wisdom, and we express our willingness to learn and to change our minds by asking questions, by sifting through the evidence together, and by acknowledging uncertainty.

Respect. All posts and private messages should be courteous. Disagree with ideas, not people. You may not attack, insult, undermine, or belittle anyone. This broad prohibition extends beyond other members and this community to the world at large.

Humility. Refrain from posturing as an expert or relying on your professional status to make your point. Support your opinions with personal or clinical experience, your physician’s perspective, and/or published medical research. Avoid overreaching - we are most credible when we focus on our own personal experiences.

Kindness. Some here are suffering. Look for the best in one another, and speak with empathy and generosity.

Trust. Ulterior financial interests complicate our interactions. Do not self-promote or advertise.

Respect the privacy of our members. While the Creative Commons License that we use allows non-commercial use of the material we create together here, be sensitive to the personal nature of some of what we share. When in doubt as to the wishes of an author whose words you would like to use in another context, ask, and respect the response.

Effective date: November 1, 2013
Last update: November 16, 2017
circular
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Re: IMPORTANT: Change to our Community Guidelines!

Post by circular »

I can see why the board approved Marc’s update! Thanks to everyone on the board for keeping this a safe place I want to keep returning to.
ApoE 3/4 > Thanks in advance for any responses made to my posts.
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Tincup
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Re: IMPORTANT: Change to our Community Guidelines!

Post by Tincup »

I concur Circ. Many thanks also to the Support Team and Moderators who do the ongoing work to make sure this is a welcoming place and these guidelines are observed!!
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Re: IMPORTANT: Change to our Community Guidelines!

Post by Bettylacy »

Great Job Support Team/ board for updating. Well stated and to the point. That's why I'm here sharing : Respect, Humility, Curiosity, Kindness and Trust. Thanks!
APOe 3/4; If you want to go fast go alone. If you want to go far go together. African proverb. :D
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TheBrain
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Re: IMPORTANT: Change to our Community Guidelines!

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Great job on these guidelines! One thing I'm wondering about is the use of affiliate links. Are they acceptable, not acceptable?
ApoE 4/4 - When I was in 7th grade, my fellow students in history class called me "The Brain" because I had such a memory for detail. I excelled at memorization and aced tests. This childhood memory helps me cope!
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Julie G
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Re: IMPORTANT: Change to our Community Guidelines!

Post by Julie G »

Alysson, help me understand what you mean by "affiliate links." Thanks.
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Re: IMPORTANT: Change to our Community Guidelines!

Post by TheBrain »

Sure, Julie.

AmazonSmile is an example of an affiliate link, but one specifically for charitable organizations. ApoE4.Info has a unique link from Amazon.com that has been encoded with a tracking cookie (often referred to as a "unique code"). What that cookie does is note when I and anyone else clicks that link and makes a purchase. Amazon.com tracks the dollar amounts purchased, organized by the unique codes. The “owner” of each code (in this case, ApoE4.Info) will then receive a donation for referring the sale.

Outside of the realm of charitable organizations, it's not a donation but a commission (or something else of benefit) that the person who provides the link receives. For example, I could become an Amazon affiliate (I think they use the term "associate"). Like the AmazonSmile program, through Amazon associates, Amazon.com provides the same products at the same prices with the same level of customer service. Amazon associates make a commission from the sales they refer.

Sometimes, it's not about getting a commission. For example, I just signed up for the Better Belly Project summit and got a unique code. They want people to spread the word about the summit. To encourage that, they are offering an extra entry in a sponsor giveaway for each person who registers through one's unique link. The more giveaway entries one has, the higher the chance of winning a sponsor's product that's being offered in the giveaway.

From a summit earlier this year, I got a free 18-page ebook for the 20+ people who registered through my unique link. So we're not talking about huge "wins" here.

I don't recall ever seeing anyone use an Amazon associate link in the forum (and that would conflict with the AmazonSmile program). However, I saw somewhere one of our members offer his/her iHerb.com unique code, but the person was open about it and explained how it works (just like you have about AmazonSmile).

I think AmazonSmile is a great program. I'm just wondering about the use of affiliate links (or "referral links" in the case of some of these summits) for regular forum members.
ApoE 4/4 - When I was in 7th grade, my fellow students in history class called me "The Brain" because I had such a memory for detail. I excelled at memorization and aced tests. This childhood memory helps me cope!
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Julie G
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Re: IMPORTANT: Change to our Community Guidelines!

Post by Julie G »

Thanks for that explanation. Let me check with the BOD to be sure before I respond.
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Re: IMPORTANT: Change to our Community Guidelines!

Post by MarcR »

Trust. Ulterior financial interests complicate our interactions. Do not self-promote or advertise.
The issue turns on the poster's interests. Transparency doesn't overcome that, and the degree of benefit doesn't factor in either.

Regarding affiliate links, they're just an instance of advertising. It sounds as though we erred in overlooking the iHerb example.
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TheBrain
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Re: IMPORTANT: Change to our Community Guidelines!

Post by TheBrain »

Thanks, Marc. I appreciate you pointing out that guideline. I read these guidelines multiple times and didn't think affiliate links were covered. But yes, I see that they are advertising, even if one's intention is to submit additional entries in a product giveaway, not to make money.
ApoE 4/4 - When I was in 7th grade, my fellow students in history class called me "The Brain" because I had such a memory for detail. I excelled at memorization and aced tests. This childhood memory helps me cope!
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