Who has the right to delete a memorial page
Message sent to Mods:
I went to look at MammaRay's memory thread. Last person to post was Joanne58. The thread links back to the main forum thread. Did it multiple times. So, either there is a glitch or you have interfered somehow with MammaRay's memory.....thread
Wiping out the community's memory of a memory thread wouldn't seem to be part of the TOS. Nor under the control of any outside person. This is the record from the forum thread
Joanne58
replied to topic
Prayers for MammaRay
on Nov 11, 2018 04:11AM
(134
total posts)
In forum:
Prayers and Spiritual Inspiration .
Since the husband was against her memory here. I object that he had a right to asked for it's removal, if that is what has occurred. Without her written permission, her thread should not have been deleted by anyone.
WHICH raises a very serious question, that needs to be addressed at the highest levels of the organization. Who besides myself can ask for my posts to be wiped out----or my memorial thread.
Have a nice day. I will create a thread somewhere for discussion Thank you, sassy"
Comments
-
I think we have the right as a community to know how MammaRay's memorial page was deleted. I know this was not a forseeable thing by the Mods. The husband who was not supportive of her involvement asked for the deletion. How do I know this b/c he interfered with multiple members. How isn't important.
What is inmportant is what this means to the entire community. I have thousands of posts. Say I die, per standard now someone can come and ask for all my posts to be deleted. Say a government agency came in and asked for there deletion. What protection do I have of my posts or a memorial page from deletion.
There needs to an ironclad statement in the Terms of Service that defines who, what, when, where, why a members information, posts, and memorial page can be deleted.
We came here with anonymity. We maintain that anonymity on our terms. We trust the BCO to maintain that anonymity and the intactness of post we have made, or post that have been made about us.
-
I am interested in knowing that as well. Why did her husband care about her posting here? I’m sure it was a source of comfort to her and many others as well.
Diane
-
I would not want anyone to remove my posts...or memory when that happens. BC.org has been very important to me
-
Legally, I'd say the executor of a deceased person has the right to ask for the removal of a post or posts. However, BCO needs to remember that the original post is but an anchor for other members to post their comments and they should not be taken down unless these individuals request it. I can recall when the original "IBC This ain't Facebook" thread went down and nearly a hundred pages of comments disappeared. So much valuable info went down the gurgle.
Mods, could you please work out a way where the removal of a member's posts don't delete comments of those who went to the time and trouble to post?
-
I am not an attorney but I had Power of Attorney for both of my parents and my husband and sister were the Executors of their estate. The complete POA was 29 pages long. As detailed and explicit the POA was, there was no mention of social media and online discussion groups. I believe this is new territory in this age of Social Media and perhaps we need to address how our social media accounts will be handled when we pass. Maybe our wishes and desires could be addressed in our Wills, including social media accounts in our POA, when we are unable to post on these accounts ourselves,and/or specific instructions to the Executor of our estate.
-
Just had my legal paperwork redone with the prior one done 12 years ago. The main thing I noticed in the first draft was language was added regarding digital property “owned” by me and it spells out what my executor can do regarding my digital property.
-
Our site, and specifically the Community Discussion Forums, exist to best serve and support our members. All actions that are taken are in an effort to serve our mission and our members. Unfortunately, due to violations of the Terms of Use posted on our site, which are in place to protect all of our users, we deemed it necessary to remove certain member accounts. This resulted in the removal their posts, and all associated threads.
Please know that these decisions are made only after very careful and thorough consideration. We understand that this may be difficult information for many of you, and we, too, are saddened by situations like this one. Out of respect for member privacy and anonymity, we cannot provide more information. Thanks as always for your candor and respect.
-
Thanks Mods for responding. I know it was a difficult situation regarding MammaRay. When you have your meeting on the subject, please, consider this in the discussion. They're memorial threads I've kept in my actives list for years before I could delete them.
I would suggest that it's part of the grieving process. By revisiting the memorial threads, it's like going to the graveside and having a chat with the deceased. Some memorial threads have folks posting for years after they are gone.
I don't have an answer for a policy, but at least a discussion and an attempt at clarification would help us all.
Thanks Traveltext, Kathy, bella, Edwards, and Beatmom for posting.
-
Moderators, I understand removing certain members, but what I've asked about before is "why can't BCO replace the removed messages from the person removed with a standard BCO message" so that all the posts in the thread by others are not removed if the originator of the thread is removed?. An established thread should never totally disappear because of one person. Certainly this could be done technology-wise, and would keep the thread there for others while still removing the individual.
Edited to add: I'm just wondering if it is a violation of copyright of what I write if it is deleted by BCO without my permission?
-
“Edited to add: I'm just wondering if it is a violation of copyright of what I write if it is deleted by BCO without my permission?“
No it is not, as your posts are not copyrighted. Additionally, when you joined, you agreed to the terms of use, which allows bco.org to modify or remove posts at their discretion.
-
I think it's shit. I don't think that anyone but the person posting should have the right to request deletion. What about her rights?
-
JWoo, I agree, over the years I have kept memory threads so I can visit. It can be comforting to visit. Perhaps I'll contact Joanne and ask what happened. Not sure if it matters why it happened. It can't be undone. But sure would like to get this hashed out so it doesn't happen in the future. Now I understand the complete anonymity idea.
-
My heart was heavy when I found out that the thread for MammaRay was deleted. Like you Ms. Sas (birds a feather flock together), I revisited the thread every so often maybe to "hear" her voice again and remember our interactions. Yes, it's part of the grieving process for me too. It's just unfortunate there were violations Terms of Use that deemed it was necessary for Mods to delete the thread.
-
The problem when threads/posts get deleted is that information is lost.
I understand the Community is a source of support more than a source of information still I venture to say when it comes to ground level common sense you get much more here than you would in a 20 minute conversation in your doctor office. Not necessarily about direction of treatment but most importantly about how to hold your wings up while negotiating this shitty thing.
I find for example Lulubee posts on incontinence, constipation and how to take care of your feet on Xeloda priceless - her observation about NOT soaking you dry feet is clever and she is spot on, oil but do not soak. Not to mention the detailed description on symptoms of a pericardial effusion a classic - not easy to pick up but she was all over it in emergency. !ita57 is guts and dignity and her thread is followed by many because it sooths like nothing else - that she manages to stay off opiates with her disease is amazing and potentially beneficial - we know morphine has immnusuppressive effects. Traveltext flag for BC in men is tireless. Z and Curious keep punching it out. Heidihill is a mountain of calm and wisdom. Grannax Y90 has inspired many. exbrngrl thread on joy and life and stage 4 rocks. Susan trial on brain mets. There are Soooo Sooo many others that I could go on forever but my point is when you delete threads you delete information that is beneficial to many.
That act of community benefit must be balanced against the act of privacy somehow - for my part I know that when I post I post - I have a period of time to delete if I have second thoughts - but then its out there.
(Traveltext knows I deleted a me post that he found ok - it cut a little too close and I felt unusually shy, I cant reproduce it because I put the lid on a lot of it, but looking back I should have kept it, it was the truth)
So mods there must be a way to write this up so people can delete their own posts but not the entire thread?
There is so much value in many of these threads...
☺️🌷
-
I see an easy solution mods. If for some reason, you want to, or have to, delete a thread, post a warning:
THIS THREAD WILL BE REMOVED IN 48 HOURS.
Posters will receive notification via their email system and they can retrieve the information they'd like to keep. Much of it being their own posts, perhaps.
When Bon's IBC thread went down, I accessed the internet web archive cache and copied out many pages then posted them to the new IBC Lounge stated by the late PurpleMinyon. Was this illegal? If so, nobody said it was.
-
“I think it's shit. I don't think that anyone but the person posting should have the right to request deletion. What about her rights?“
I wish that entire threads wouldn’t disappear when the the op, or others as the mods decide, ask for removal, but we all understood that this was possible when we agreed to the terms of use. There may be circumstances, that we’re not aware of, that cause this to happen from time to time
-
The same happened this summer with the Diet and lifestyle thread. I was new to this forum (and diagnosis) and was reading pages and pages of this thread, discovering invaluable info. And then one day "puff" and the whole thread was just gone, hundreds of pages of info, research, recipes, experiences. what a shame! I don't get it. All that was necessary was to delete the single first post, without making the whole thread disappear....
-
I find it disturbing that a thread can be eliminated totally when only the original poster chooses. What about the rest of us who benefit from the thread and have posted there ourselves? I often see posters referred to themselves as the "owner" of the thread, but I have never felt that way about any thread I've started. I wonder if that is actually part of the user agreement or just their mindset about running a thread. No one should "own" a thread or be allowed to have other people's words deleted unless they violate the user rules. Again, the easy answer should be that if a person chooses to delete their threads and posts therein, those thread headers are replaced with a generic BCO placeholder saying something like "the original thread post has been deleted by choice by the member." We might lose whatever it was that the originator posted, but not the whole thread. It would not be hard technically and would solve this continuing problem. Sorry, traveltext, not big on the idea of giving notice--I choose not to get emails and I'm not always on everyday--and if it is a long thread, would not want to spend time gleaning information in haste.
Mods, let's please get a workable solution before this happens again.
-
Dear ceanna and all who have offered their thoughts and suggestions here,
We appreciate your thoughts and suggestions. We will continue to discuss your concerns as they relate to losing an entire thread when an individual's account is deleted. We agree that such is not optimal for the community. We need to work with our tech team to explore options. We will keep you posted.
The Mods
-
This problem has come up several times before. This was my response on the technical issues thread. I repeat it here, hoping that maybe the technical team has had time to find way to implement these suggestions.
Aug 25, 2018 09:28PM
Mominator
wrote:Moderators,
Suggested option 1: Maybe a phone call or private message to suggest to a person, rather than leaving, that they take a step back from the boards. Maybe a small bunch of posts need to be deleted while they take a break, but the rest of their contributions could be left behind, explaining that their contributions are valuable and other members depend on the information contained in the threads.
Suggested option 2: If they still insist on leaving, could you separate the user account from the created threads? Then deleting someone's account would be just their profile information. Maybe you could delete the user name, but leave behind the posts. The credit could go to "Deleted Member" or something similar, leaving the posts behind. If a person doesn't like their posts, they always have the option of deleting individual posts. Again, a small bunch of posts need to be deleted, but the rest of their contributions could be left behind as Deleted Member.
For example, we lost a lot when B** asked to be deleted. Her "death bag" has been recreated, but many threads were lost. The Amen prayer thread, for example. (From my point of view, it looked like a misunderstanding, and only a small cluster of posts were bad. If those posts were removed, maybe it would have been resolved. There's probably more to the issue that what I saw.)
Suggested option 3: Worst case, deleting an account would delete all their posts, but leave a blank/place holder as a post. Similar when we see "This post deleted by user" but there's still a space there. The thread still exists, with blank posts from the deleted member.If the deleted user/poster is an original poster in some threads, then the original post will be blank. You could offer one of the active users the opportunity to replace the original poster's post with some other head post describing the thread.
I appreciate the balancing act of handling many thousands of users with many different opinions. I hope my ideas here do not suggest you are not doing a great job or minimizing the job you do. Or maybe I'm misunderstanding how things or users work.
Best regards,
Madelyn / Mominator
-
This has been an issue for years. Some extremely valuable discussions threads have been deleted. The effort that other members put into their posts, the important information discussed, the help and assistance provided, all lost because one person decides to leave the site and requests that her posts be deleted.
We've been asking for a fix for years. It seems pretty obvious. If someone requests that her (or his) posts be deleted, those posts should be deleted. No one else's. That's what already happens when someone posts within a thread - the deleted member's post simply disappears. If an IT fix is needed to address situations where an individual started a thread, so that only the opening post is deleted and not the entire thread, then it should be done. The input and effort of all the members of this board who contribute within other people's threads should not be deleted because of the whims of another (former) member.
-
Logically put Beesie. I'd add: then update the TOS.
Mods, this is not a difficult coding job, you really should move on it asap. The long-termers here don't need one more reason to retire from the boards.
-
Mods, we grieve those that are gone. We have no grave to walk too. We have no gravestone to see. We have no grave to sit by. Not everyone here has a memorial thread. They're a two types. One, where we know they are dying and we talk to them. Second, after death.
Actually, I think that is the most common is before death.. Rare a memorial thread is done after death. Anyone knowing I'm wrong speak up.
For those that had memorials pre death, they broke my heart, but they were amazing. Women saying I love you, and many other blessings on their life. Thinking for the moment on Jill Thut . Jill was dying. Her thread started by whomever. We had an on going discussion with Jill. Gone into the computer netherworld, but was not deleted
/Mods, your job is defined, but you don't know us, unless you have had cancer. It changes your life, It changes your perception about everything. You are a tool that makes what we write ---controlled.
The organization is a positive towards the BC community. But when a memory can be wiped out, you need to look at that closely. I am, Others are. In a moment with a delete button you can wipe out all my memories here. Not rightYou seriously, need to deal with this. I've been here since 2009. I never saw a memorial thread deleted.
-
Folks this is a extremely followed issue----few posts but many views, BCO does pay attention to our thoughts and recommendations. Please, consider that your opinion is important. The following shows how many have followed this topic. It is a hot button topic. Let your voice be known.
Who has the right to delete a memorial page
24 Posts
593 Views
Created by:
sas-schatzi
on
Dec 4, 2018 06:06PM
Latest post:
10 minutes ago
by
sas-schatzi -
Dear BCO friends, What the numbers say in the above post is this is important topic, BUT if you don't post, BCO when they develop their TOS will not have our thoughts incorporated. Do not be hesitant about posting your thoughts. BCO can't develop a TOS without us giving our opinion
This is a serious subject
-
We are going to work on changing things from a technical standpoint, as not to delete entire threads!
-
Glad to hear that mods! Looking forward to a quick solution. Thanks.
-
Great news. Thank you.
-
Yay! That is great news!! Thanks Mods!
-
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team