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(The Maintainer) |
Legal Disclaimer:
As far as any document on this website points to other documents
on other websites or webpages (links) it must be clear that
their contents cannot be influenced by us in any way. This is why
we cannot be held legally responsible for contents of
websites not owned by ourselves. In fact we are not always
actually informed about the contents of websites or webpages we
are pointing our links to. We do not even administer our own
mailing list server and are not able to influence how it is
adminstered by KNF -
therefore we are not responsible for that, either.
Furthermore Metab-L is a website and archive place for a mailing
list with several hundred members. Metab-L
participants own their own postings with all rights and
responsibilities. The administrators of the Metab-L website and
the Metab-L mailing list are in no way legally responsible
for the contents of what is being posted and archived.
Data security on Metab-L cannot be guaranteed, although the site
and the mailing list are reasonably administered, so any message
contents must be chosen by their respective author with all due
data security considerations and legal obligations and
restrictions in mind.
NEWLY ADDED SECTION - MAY 25th 2018 - with regard to the new
GENERAL DATA PROTECTION LAW of the EU - this is an integral part
of this legal disclaimer and in case of conflict take precedence
over anything else written on this page or site:
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, but it is your right, as it
has of course always been, to disapprove and no longer be
subscribed to METAB-L now or 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):
PIIs are all kinds of data that refer to an identified or
identifiable person (including name, location, gender, race,
nationality, IP number and such. 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 (processing meaning
practically anything you can do with data automatically or
manually) 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 as the host of the mailing
list server and the mailing archives). I have no control over, and
assume no responsibility for the content, privacy policies, or
practices of any third-party sites or services, but the Data
Protection, Data Security and Privacy rules of KNF as the host of
METAB-L, which can be found here are
definitely part of this legal disclaimer and I strongly as ḱ you
to look the up and peruse them.
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.
END of THE NEWLY ADDED GDPR-ASSOCIATED SECTION
Please also see paragraph
4
of "The Rules and Conventions" which is to be regarded as an
integral part of this legal disclaimer.
Metab-L is kindly supported by:
Nutricia
Metabolics, Nutricia GmbH, Germany |