For discussing Inborn Errors of Metabolism

private information

A computer mailing list providing an international discussion forum for "professionals" in the field of inborn errors of metabolism. Please see http://www.metab-l.de for further information and "frequently asked questions".
Number of subscribers as of December 2017: 1765
Listadmin: cjrenner@well.com List Language: English
Metab-l is kindly supported by Nutricia Metabolics, Nutricia GmbH, Germany.
Wikipedia entry on Metab-L: http://en.wikipedia.org/wiki/Metab-L



Legalese - PLEASE DO READ

In the European Community the General Data Protection Regulation (GDPR) (or in German Datenschutzgrundverordnung DSGVO) has become law on May 25, 2018.
I am no laywer and actually resent the whole thing, but I guess I am bound to it like everybody else.
You might be interested to read up about the law (although I can hardly imagine you would be), so that is where to find the proper information: https://ec.europa.eu/info/law/law-topic/data-protection_en. Especially relevant might be Art. 6 Abs. 1 lit. a, b, c and f and Art. 7 GDPR, which cover how to get your approval, processing data, answering subscriber questions and such.

Being anxious about the whole thing I drafted the following Information, Policy, Rules and Terms of the Service for Metab-L (by stealing most of it from other websites). I hope it is adequate, does not scare you off, nor invites you to sue me (please don`t , youst email me at cjrennerATwell.com if there are any complaints).
If you do not like the text below, please let me know (at cjrennerATwell.com, please if possible not via the mailing list, this would be very off-topic) and I will try and adapt things. But as long as you are a member of METAB-L your are bound to the current set of rules (as stated below) and would have to unsubscribe if you do not accept them (I hope, noone will). It is technically not possible to ask each and everyone of those already subscribed to METAB-L for their approval; I trust that emailing this text to every subscriber, which I have done, is enough. New subscribers can only subscribe if they approve of these rules. Actually nothing will change about the way METAB-L has always been as far as I see it. If you do not unsubscribe I will take it that you accept the rules below. By subscribing or remaining subscribed you approve, but it is your right to disapprove and no longer be subscribed to METAB-L any time in the future (although I do hope you stay with us and keep on using METAB-L as you have done in the past - I repeat only EU laws have changed, nothing about the way METAB-L works has).


Metab-L Privacy Policy, Community Rules, and Terms of Service
This policy is effective as of May 25, 2018


Data Protection Officer
Per the GDPR, Metab-L ’s Data Protection Officer (DPO) is Dr. med. Christian Renner, Pfleggasse 31, D-94469 Deggendorf, Germany. DPO can be reached at cjrennerATwell.com.
The local authority responsible for ensuring that relevant laws are being followed by this site and the mailing list is the Bayerisches Landesamt für Datenschutzaufsicht (BayLDA).

What the Metab-L mailing list is and does has not changed since its beginning in 1995 and from what has always been described and stated on the Metab-L mailing list homesite (www.metab-l.de).
By subscribing to or remaining subscribed to the Metab-L mailing list, you are aware that your email address, possibly your name, possibly any personal information (like your job, maybe your residence and such) are in the mailing list's database, can be looked up by present and future members of the mailing list, me, the people providing the hardware and software of the mailing list (= KNF at www.franken.de). And of course, being subscribed to the METAB-L mailing list you are being emailed all the postings members make to the mailing list in the way your selected (simple or digest), you want that and you grant that.

By posting content to the Metab-L mailing list, you grant—and you represent and warrant that you have the right to grant, represent and warrant—Metab-L a non-exclusive, perpetual, but revocable (mail to cjrennerATwell.com), worldwide, omnipotent, and royalty-free right to distribute via the mailing list to all current and future members of the mailing list and to make accessible to current and former members of the mailing list via the mailing list archives. We do NOT assert copyright over the things you post to Metab-L. The phrase "non-exclusive" above means you can post your content elsewhere. By posting something to Metab-L you let us use it for the purposes of the mailing list as described e.g. on www.metab-l,de, but you do not restrict what You can do with it. You are aware that anything you post on the Metab-L mailing list is being emailed to every current member of the list, is stored in the list's archives and therefore is accessible to at least me, the providers and maintainers of the list's hardware and software (KNF at www.franken.de) and via the archives to every future listmember, as well. Due to Metab-L not being a high-security installation (although I have always tried to maintain as much privacy and data security as possible and always will) there may be a diffusion of postings into the public, as much as I have always tried to prevent this.
If you do not want your postings to be distributed and stored in the mailing list archives permanently and with access by all present and future listmembers and other people mentioned above and below, you cannot post to the mailing list (which would be a pity). If you want your older postings erased from the archive you have the right to demand me to do that - although this would be a pity, as well, a lot of work and would not erase your postings from the harddisk and such of all those members who received your posting at the time you sent it to the mailing list.

DMCA
If you believe that your copyrighted work has been copied in a way that constitutes copyright infringement, please notify cjrennerATwell.com as set forth in the Digital Millennium Copyright Act of 1998 ("DMCA"). For your complaint to be valid under the DMCA, you must provide the following information in writing:
An electronic or physical signature of a person authorized to act on behalf of the copyright owner;
Identification of the copyrighted work that you claim has been infringed;
Identification of the material that is claimed to be infringing and where it is located on the Service;
Information reasonably sufficient to permit Metab-L to contact you, such as your address, telephone number, and, e-mail address;
A statement that you have a good faith belief that use of the material in the manner complained of is not authorized by the copyright owner, its agent, or law; and
A statement, made under penalty of perjury, that the above information is accurate, and that you are the copyright owner or are authorized to act on behalf of the owner.
The above information should be submitted to:
Dr. med. Christian Renner, Attn: DMCA Notice, Pfleggasse 31, D-94469 Deggendorf, Germany

HIPPA compliance
Gosh, I do not even really know what this. Anyway please be advised that very probably METAB-L does not ensure full HIPAA compliance. So if you need to comply, please post only what does.

What information do we collect? As a rule only data are being collected, processed and stored which are necessary for the service and nature of the METAB-L mailing list.
Personally Identifiable Information (PII) Metab-L collects, as defined by the General Data Protection Regulation (GDPR): Personally Identifiable Information (PII) we collect for all site (www.metab-l.de) and mailing list users MAY include (actually I do not know and apart from what is needed for the functioning of the mailing list I do not knowingly collect anything):

Data that may be collected and processed or stored can be of the following kinds: Account basics (like names and adresses), contact data (like email address, telephone numbers, homepages), content data (texts, postings, photos), information about usage (e.g. server logs), meta- and communication data (e.g. IP addresses, OSs used, devices).
Or phrased differently: security and abuse-monitoring data, including, IP address, Browser/OS version, Account basics, User name, email address, your name, data you voluntarliy provide in your application email to me, location and job details, (for public display), Device OS/version, Device ID and possibly other information you might consciously or inadvertently provide by using the list or the website and which I am definitely not currently aware of now - I will update this whenever I should become aware of any additional items here. Log Data of the website (I have never seen them, but I guess there are some on the server) may include information such as your devices's Internet Protocol ("IP") address, operating system version, configuration of the app when utilising the Service, the time and date of your use of the Service, and possibly other anonymous statistics.
All informations are collected for the sole purpose of running the mailing list, no informations are sold to any third party or sold anyway. Other purposes might include
To collect and analyze usage analytics on our user base, to send members service and feature updates (including of planned outages, new features, and version updates), to communicate with members about their accounts, and to provide customer support, to collect payments (there have never been any! and won't for the foreseeable future) or donations for Metab-L service, to monitor and enforce compliance with our Terms of Service and applicable law and to respond to lawful requests by public authorities, including to meet national security or law enforcement requirements.
Sending Metab-L postings (content data, see above) across country borders, especially into and out of the European Community, is regularly done as this is a mailing list, where postings you make to the database via email are immediately distributed via email to all the subscribers of the mailing list who do come from almost all countries on earth. This is the purpose of the METAB-L mailing list and therefore you have to accept and grant this, to approve or unsubscribe - or at least not do any postings to the mailing list (which would be a pity and make METAB-L useless). Furthermore account basics and contact data, as well as possibly meta- and communication data can be extractable from the distributed email postings or from use of the website.
However I have always tried to make sure, as best as I can, e.g. by asking for CVs or personal data before subscribing a member, that every member of METAB-L is indeed professionally interested and involved in Inborn Metabolic Diseases (physicians, dieticans, nurses, geneticists, biochemists and such, including people who work for commercial firms dealing with inborn errors of metabolism and such patients).

Member rights
The EU General Data Protection Regulation (GDPR) includes certain rights for certain covered individuals, concerning their personally identifiable information. We intend to fully comply with these provisions, except as limited under applicable law. These rights include:
Right of access. The right to be informed about and access your personal data.
Right to erasure ("right to be forgotten"). The right to request that we remove your personal data.
Right to rectification. The right to request that we rectify your personal data, or allow you to do so, where it is incorrect.
Right to restrict. The right to ask that we temporarily or permanently stop processing all or some of your personal data.
Right to withdraw consent. The right to object to us processing your personal data.
Right to data portability. The right to request a copy of your personal data. (although I might have a hard time to fulfill your request of this, having to look up what might be relevant and such...)
Right not to be subject to automated decision-making. The right to not be subject to a legal or similarly significant decision based solely on automated decision making.

Security
I try to do what is reasonably to be expected, but please remember that METAB-L is no professional service but has very limited resources and no method of transmission over the internet, or method of electronic storage is 100% secure and reliable, and METAB-L therefore cannot guarantee its absolute security. When I was new to the internet people used to say that Email is like a postcard - it can be read by anone who touches it - and you must keep that in mind. We have always tried to be "among ourselves" here, but email is never 100% secure and the METAB-L mailing list is based on and transported by unencrypted email over the internet and the website is a website, nothing more. We have never had security or privacy concerns since the day METAB-L started, though. Despite our efforts (and our resources are limited), no security measure can be absolute, and there can be no guarantee that Your personal information will not be accessed through malicious means, inadvertent disclosure, or mistake.


Links to Other Sites

Metab-L website and postings may and do contain links to other sites. If you click on a third-party link, you might be directed to that site. Note that these external sites are not operated by Metab-L. Therefore, I strongly advise you to review the Privacy Policy of these websites, including KNF (www.franken.de) as the host of the mailing list software and the mailing list archives. I have no control over, and assume no responsibility for the content, privacy policies, or practices of any third-party sites or services


Changes to This Policy and Declaration
METAB-L may update our Privacy and Data Security Policy from time to time. You are advised to review this page (on www.metab-l.de) periodically for any changes. METAB-L will notify you of any changes by posting the new policy there and on the mailing list. These changes are effective immediately, after they are posted on this page or on the mailing list.

These terms and conditions are subject to the usual change-at-any-time rule that websites put on their terms and conditions and which seem so unfair. ("What, I have to submit a DNA sample?") We may have to edit them as new situations come up (I am so happy about all these wonderful people who think up and make all these wonderful laws and regulations). We promise to make all changes openly, with tracking and with the opportunity for users to withdraw their accounts.

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