KIDNEY-ONC List Rules
We want KIDNEY-ONC to be a place where people are free to express their concerns, and share information and support. But we also want the list to be SPAM-FREE, to stay within the bounds of the law, and to be civil. We also want to protect your privacy to the degree we can. So we do need a few rules.
If you have any doubt about whether a posting would break the rules, please write the listowners before you post!
Two Important Rules
We put these two up front so you cannot miss them - please read!
RULE #1: COMMERCIAL POSTINGS ARE STRICTLY PROHIBITED
If you have something to sell, you are very definitely in the wrong place! Anyone posting advertisements to this list will be deleted immediately and without warning. In addition, we may request that your ISP terminate your account for willful abuse, and if we think you are making unsupported claims of a cancer cure we may register a complaint with both the Federal Trade Commission, and the Food and Drug Administration.
RULE #2: Kidney-Onc is for Patients, Their Supporters, and Allied Professionals
This list is primarily for kidney cancer patients, their supporters and loved ones, and health professionals who wish to lend their support and knowledge. If you are subscribing to the list for any other purpose, please contact the listowners PRIOR TO POSTING ANY MESSAGE or beginning any research project.
This includes people who want to post a survey or questionnaire of any sort, or who want to post an announcement for a charity, or who wish to archive or redistribute the contents of KIDNEY-ONC. We also request that anyone observing our list for research purposes contact us. Attorneys researching cases, or looking for clients are not permitted on KIDNEY-ONC. Anyone else who is not a kidney cancer patient, supporter or health professional should contact us at the above address. Requests will be considered on a case by case basis. Posts from political advocacy groups are not permitted except by permission of the listowners.
RULE #3: Respect Copyright
Posting of copyrighted material to the list without permission of the copyright holder may be an infringement of copyright, and could subject you to civil penalties including fines of tens of thousands of dollars. Please don’t post copyrighted material to the list! Although we want to obey the law, we definitely don’t want to discourage sharing of information which can save lives. We also believe that sharing of vital information is possible within the laws of copyright!
A second issue is your use of someone else’s postings. This is partly a matter of copyright and partly a matter or courtesy.
Your listowners are not copyright attorneys and cannot give you legal advice as to what might be a copyright violation. We can give you our best layman’s guidance, but we can’t give you a guarantee! If you are in doubt, don’t post. So here’s the scoop (as we see it)
In general, anything that anyone writes is automatically copyrighted by them, even if there is no copyright notice. So in general don’t post anything written by someone else! There are some exceptions.
Things which are always OK to post include:
· Anything you write yourself, including a summary of a copyrighted work.
· The URL of any page on the Internet (post the URL, not the content of the page!).
· A reference to any paper in the medical literature.
· Quoting a message someone else posted to the list.
· Anything which you have permission of the copyright holder to post.
(When you post, please state that you have have permission.)
Things which may be OK to post (and to which the listowners won't object) include:
· Medline Abstracts
· Short quotations from copyrighted material to illustrate a point.
· Press releases or other material clearly intended to be distributed - but remember advertising is not allowed! Only post PR material if you have absolutely no interest or involvement, and are completely sure it's relevant!
Things which are not OK to post without permission include:
· News articles and other copyrighted material from web sites, newspapers and the like
· Private correspondence
Sharing List Posts With Other People
· You May Not Re-Post KIDNEY-ONC Messages to Other Forums or Websites Without Permission
Under US copyright law, all messages posted by KIDNEY-ONC members are automatically copyrighted by the author. No copyright notice is needed! Members of our list expect that their postings and the personal details they reveal are shared with the list, not with the whole world, and not with people who are not members of the list. Therefore, you must not re-post messages to any other forum, such as another list, a chat group, a bulletin board, or to any web site, unless you get permission of the author. If you do re-post a KIDNEY-ONC message anywhere else, please state that you have obtained the appropriate permission.
· You should get permission from the author to e-mail a copy of a KIDNEY-ONC message to anyone who is not a member of the list or show it with anyone who is not a member of the list with some exceptions.
· It's OK to share messages with others who are immediately involved with your situation, including your doctor, when this is done for the purpose of advancing your care, and when it will not harm the author.
But you may not show any message from a patient who is critical of their doctor's behavior to that doctor without permission of the author of the message. This could jeopardize the other person's relationship with their doctor. Anyone found to be doing this will be removed from the list.
· It's also OK to share old messages with current members of the list, since any list member may search the archives and thus has access to these messages already.
RULE #4: Don’t Post Chain Letters, Virus Warnings, or Other Off Topic Material
By a chain letter we mean any message which asks you to forward it on to others. Internet messages like this acquire a life of their own even though it turns out they are usually hoaxes or scams. Typical examples include warnings about computer viruses, or claims that you can help a charity by going to a certain web site, or claims that there is to be a tax on e-mail. Even in the rare case where one of these letters is actually accurate, they are off topic. So before you forward a chain letter message on to the list, stop and think:
- Is this on topic?
- Have I checked to be sure it’s accurate?
Some places where you can check on the status of various hoaxes and virus warnings are:
- Break The Chain is an anti-chain letter site with good advice on recognizing e-mail chain letters, and a searchable database of known chain letters. The site’s author will also check-out possible chain letters for you if after researching you don’t find anything definitive.
- Computer Virus Hoax Page from Symantec Corporation. Symatec is one of the major anti-virus companies, and if there is a real virus, you will certainly find information on it in their Virus Encyclopedia
- VMyths Virus Myths Page – a bit commercial but lots of info
- HoaxBusters is a comprehensive site which covers myths, chain letters, fake virus warnings, and much more.
- Urbanlegends.com – covers various other stories you might find floating around on the net.
- Finally you can always go to a high quality search engine such as, Google, and type in a key phrase from the chain letter you got. You’ll almost always get telling results.
Of course, just because a chain letter isn’t listed in a database of hoaxes doesn’t mean it’s true! If you don’t find it listed as a Hoax, you need to find some way to verify it’s true before you even think about posting it to the list!
If, after this, you still want to post such a message to the list, please contact the listowners first!
RULE #5: Be Civil
Fortunately we have had very little in the way of personal antagonism on our list. On the whole we are extremely supportive of each other! At the same time with over 1400 members disagreements and occasional friction are inevitable. It’s perfectly OK to disagree with someone, but it’s important to keep the tone civil. No flame wars! If you writing an angry post stop and ask yourself if you could make your point in a calm way before you press ‘send’. Leave your message for a few minutes and do something else. Then come back and read what you’ve written. If you think that someone has criticized you, keep in mind that our words don’t always come out exactly the way we meant them to, and occasional misunderstandings are possible even when no criticism is intended. This is especially true on the Internet where you can’t see the person’s face and hear their tone of voice!
RULE #6: Respect Religious and Political Diversity
Religion is a delicate topic! Faith is very important to many, especially during a life crisis like cancer. No matter how strong your personal faith, it’s important to realize we have a great diversity of religious beliefs among our members, and that not everyone shares your faith, whatever that might be. Many people will be offended by posts which preach to them, or which assume that they believe in the same God you do. Don’t post messages which advise people to pray, or tell them that they will be helped by a particular religion or even by religion in general. Anything which might be considered proselytizing should be avoided. At the same time asking people to pray for you, or expressing how your faith has helped you should be fine. Sometimes it’s a very fine line – use your best judgment!
Politics is generally off topic and not an appropriate subject for the list. Occasionally a legislative bill or political issue touches directly on cancer, and in this case, careful discussion in your own words would be appropriate. If you do post on a political issue, avoid blatantly partisan rhetoric. Again, please use your best judgment! Forwarding calls to action relating to political causes that you’ve gotten from someone else falls under Rule #4, above, on chain letters. Please don’t!
Advocacy Group Messages: The listowners may authorize certain political advocacy groups to post messages relevant to kidney cancer. The listowners do not necessarily endorse the positions advocated. It’s fine to discuss such postings, and even to disagree, but you must avoid partisan rhetoric and flame wars.
RULE #7: Obey ACOR’s Terms of Service
KIDNEY-ONC is hosted by ACOR, the Association of Cancer On-Line Resources, which has similar lists for most types of cancer. By subscribing to KIDNEY-ONC you agree to accept ACOR’s Terms Of Service.