Terms & Conditions
1.- Aim and Purpose
Thanks to the enormous strides sequencing technologies have experienced over the past decades, today we can access the complete information of our genome in a quick and reliable way. This technologies have enabled the scientific community to expand knowledge of genetics mechanisms responsible for our biological responses and, when they do not work well.
At Genomcore we want everyone to improve their well-being by reaching the countless possibilities of genomics, the cutting edge medical science. And we do it in a simple and accessible way, without giving up on your privacy or security. We offer you an online platform that allows the acquisition and storage of your genomic data. From this platform, we connect you with specialist doctors, researchers and personalized health services whenever and however you like.
2.- Object and Generalities
The present general conditions of use (“General Conditions”) provides the rules governing the services offered to users through GENOMCORE SL’s platform. “Genomcore”, “Genom.care”, “Made of Genes”, “MoG”, “we”,”us” or “our” shall refer to GENOMCORE SL, with CIF (tax identification code) B-66452160 registered in the Barcelona Mercantile Registry, volume 44.742, sheet 201, page B-465.064, inscription 1, with registered office in Virgen de Guadalupe 18, 08950 Esplugues de Llobregat (Spain), e-mail firstname.lastname@example.org and the web site https://genomcore.info/genomcore and https://madeofgenes.com/ of its exclusive property.
Access to this web site is free of charge, except for possible connectivity costs through telecommunications networks supplied by an external provider that the user might have contracted.
These General Conditions apply regardless of whether the user is a mere web site visitor, or has registered with us as an Analyst, Final client or Healthcare professional (“User”).
By using this web site the User agrees to check and to be bound by these General Conditions, and agrees to comply with all the provisions hereby contained.
Our platform has been designed to be used by any person over 18 years old (natural personal). Any access to the services offered by Genomcore web site must be done by individuals above the minimum age or by their legal representative, who shall necessarily accredit his/her status as such. If we acknowledge or have a reasonable suspicion of having collected data from people under the age minimum or people who are incapable without due representation, we will remove the data from our data base immediately.
With the aim of promoting an understanding of the General Conditions, some relevant concepts and explanations are detailed below.
DNA: acronym of ‘Deoxyribonucleic Acid’, the molecule responsible of storing and transmitting the hereditary information from one generation to the next in living beings. Its typical formation is that of a double helix made up of multiple subunits, the nucleotides, from which there are 4 types usually represented by their initials A, T, C, G.
Analyst: physical or juridical person accredited to operate as such, with technical knowledge to provide genetic analysis services; by one or more persons in charge of providing services, acting individually or as a team.
Final Client: physical person subject to a genetic analysis whose clinical information, including the genomic sequence, is being stored in the Made of Genes platform and which, either from within the platform, or through the prescriber contacts with the Professional Analyst to request and, in this case, contract services.
General Conditions: these General Use Conditions.
Specific Conditions: the particular conditions between Made of Genes and the different types of Users.
(Informed) Consent: formal procedure whereby a patient agrees the execution of analysis or medical research that implies ceding of Personal Data to a third party, which will include the signature of both the patient, and the prescriber in charge of the request and respective informing of the patient. Each consent will provide information about the usage and finality, the nature of the ceded information, consequences of the analysis or interpretation (as applicable) to perform, the identity of the Healthcare Professionals involved in the analysis or research, as well as the maximum time of the cession. This information must be provided in advance by the Analyst or, otherwise, the Healthcare Professional, the latter being responsible for the fact that the content is suitable, appropriate and complete taking into account the applicable regulation of the services. Each service or project will need specific consent, either under supervision of the Healthcare Professional who requests it or by request of another Healthcare Professional, even though both may belong to the same Healthcare institution.
Genetic Data: any information that comes from relationships between relatives, data derived from DNA sequence fragments.
Genomic Data: information associated with the whole or partial sequencing of the DNA of a genome, and by extension, other data of molecular origin like RNA, Proteins, etc.
Raw Genomic Data: information obtained at the end of a sequencing process, that cannot be interpreted without a preliminary processing of this data.
Processed Genomic Data: resulting information after processing the data obtained after a sequencing process. For instance, the processing needed to reorder the DNA fragments after a high-throughput sequencing process.
Personal Data: numerical, alphabetical, graphical, photographical, acoustic or any other kind of information related to physical persons identified or identifiable. This includes, among others, Genetic Data, Genomic Data, Raw Genomic Data and Processed Genomic Data.
Monogenetic Diseases: also known as rare or Mendelian diseases, they are diseases that appear at very low frequencies in the population. Even though they are of low frequency individually, altogether they are not that rare: it is estimated that there are 8.000 rare diseases in existence and that 1 of every 17 Europeans will suffer one of these diseases during their life. They are particularly relevant for newborns since 75% of cases affect children, the most severe cases appearing before 5 years old. They received this name for its clear genetic origin, generally very specific and with a single gene responsible.
Exome: an exon is a codifying region of a gene, which information is translated into a functional unit (RNA, proteins). Not all the information contained in a gene is translated into functional unities, only the information contained in the regions of a gene called exons. The exome is the aggregation of all the exons in a genome. In humans this corresponds to approximately a 2% of the nucleotides of the genome (about 50 million of nucleotides).
Extended Exome: also called Exoma Plus, comprises the coding region of a gene plus other flanking regions (about 71 millions of nucleotides)
Genes: fragments of DNA with a specific nucleotide sequence, that the organism uses to make one, or more, proteins. These proteins will be responsible for the formation and acting out basic functions of an organism, or the origin of some diseases when they are not performing their function correctly.
Genome: the whole hereditary material (DNA) of an species. Each cell of an organism has a copy of the genome. In humans the genome comprises 3.200 millions of nucleotides grouped in 23 chromosomes; in each cell there are 2 copies of the genome, originally one from the mother and the other from the father.
Genetic Markers: specific region of the DNA, with a known location in the genome and variable between individuals. Used in research to identify other nearby elements, or with predictive or diagnostic uses. We consider examples of specific Genetic Markers the Single Nucleotide Polymorphisms (SNP) or genetic regions identified by their coordinates.
Healthcare Professional: professional committed to healthcare, appropriately qualified and subject to current regulations, as specified in the Spanish regulation regarding Organization of Health Professions, 44/2003, 21st of November.
Platform: private computational system that allows the collection, maintenance and processing of Genetic Data, at the same time that provides the necessary functions to manage information flows, data access and other interactions of the User.
Prescriber: Healthcare Professional authorized to request and prescribe health services and that informs the User about the reach and potential consequences of a service.
Sequencing: process by which the nucleotide sequence of an specific segment of DNA is identified, transforming the chemical information into text, which can be digitalized afterwards.
Service (Request): requests of specific interpretations or analysis of Genetic Data demanded by the Final Client to the Prescriber and/or the Analyst. A Service Request with implications on the health of the User will always be linked to an Informed Consent and must be supervised by a Prescriber.
Web Site(s): https://genomcore.info/genomcore, https://genom.care or https://madeofgenes.com
High-throughput Sequencing Technologies: group of various methodologies to sequence long fragments of DNA, like exomes or whole genomes. They have a shared first step where the DNA is divided into fragments of hundreds of nucleotides that are sequenced in parallel, and are then reordered afterwards.
User: generic form to refer to any interacting party external to Genomcore that visit the Website (being them Final Clients, Healthcare Professionals, Analysts)
4.- Users’ Obligations
The User acknowledges and accepts that the use of the web site will be entirely on his/her responsibility, consequently Genomcore will not be held liable for the misuse of it.
The User must use the web site in accordance with these General Conditions, the Specific Conditions and the applicable current Spanish legislation. In particular and not limited to, the User agrees to observe the obligations imposed by the Spanish rules governing data protection and information society services.
In this sense, the User guarantees to have the valid Informed Consent as foreseen under the Spanish data regulation framework. In the case of non-compliance with the Spanish regulations regarding personal data protection and information society services, the User will keep Genomcore harmless, out of any damage or liability that might result from any unlawful act.
You may not use our web site for any fraudulent or illegal purpose or that might be intrusive for the privacy and intimacy of any, threatening, discriminatory, violent, intimidating or abusive, related to gaming and lottery, gambling, explicit sexual content, infringe patents, copyright, industrial or intellectual property from third parties, create spam or unsolicited mass mailing or transactions, intend to impede, limitate, distort access and functioning of the website, access terminals (mobile phones, computers) or its access and use to the rest of the Users, or that by any means infringe current legislation or threatens individual’s fundamental rights.
If we suspect that any User uses or have used this web site for illegal or expressly forbidden activities by these General Conditions, breaches or provide any false or misleading information, we reserve the right to pursue any legal (or some other type of) action in order to protect our own or third party interests. Such actions might include blockage, temporary suspension or closing of the Users’ account, without any compensation and without prejudice to possible civil or criminal actions – among others.
Under certain circumstances we can disclose individual data: only when a resolution from a competing judge requires so. In such case, we will make it available to the authorities, blocks or encrypted files with the Users’ key, although the content to the units of information cannot be accessed.
The User accepts and recognizes that although Genomcore make an effort to ensure the technical and factual accuracy of the web site content, this only has a general and indicative character. Consequently, Genomcore is not liable for the decisions taken by the User from the given information through the website, neither the damages caused to the User or third parties.
Genomcore will be solely responsible of the damages the User may suffer because of the web site usage, when such damages are due to Genomcore wilful misconduct. Genomcore shall not be responsible for the damages that might occur, including but not limited to: (a) interruptions, virus, faults, interferences, omissions, disconnections of the electronic or communications system on its equipment for reasons beyond Genomcore control; (b) delays or blockages in the web site usage due to deficiencies or overloading of the Internet system, lines or power or communication systems; or (c) third parties illegitimate performances beyond MoG control
6.- Intellectual and Industrial Property Rights
The content offered through this website is subject to Industrial and Intellectual Property Rights and is the exclusive property of Genomcore or natural or legal persons who are informed.
Unless explicitly authorized by Genomcore , nothing contained in these General Conditions should be construed as granting any license or industrial and intellectual property rights. If authorised, the User can exercise such rights only under the terms in which has been authorized by MoG, on a non-exclusive and non-transferable basis, and only during the eligible period.
The User accepts and recognizes that Genomcore has exclusive rights over its Intellectual and Industrial Property Rights.
The User won’t perform or allow the performance of any act that could undermine or depreciate the value of such rights.
The User won’t request for any mark, name, symbol, logotype, tradename registration or any other element that may result in identical or confusingly similar to Genomcore intellectual and Industrial Property Rights; or that by any means is likely to cause confusion with them. The User may not use any of the Intellectual and Industrial Property Rights as part of his/her business name, commercial name or domain name.
7.- Modification of the Conditions
Genomcore is entitled to modify at any time and without prior notice the website settings, as well as these General Conditions, which will apply immediately after its publication. Users shall have these General Conditions available at a visible location, freely accessible to be viewed whenever required. Additionally, an e-mail will we be sent acknowledging such changes. Users shall commit themselves to read these General Conditions carefully whenever accessing the web site or the platform.
Certain services offered by the platform might contain special or particular conditions with clauses concerning personal data protection which will prevail over these General Conditions. In this sense, it is important that the user bears in mind the following.
8.- Partial nullity
In case any clause from these General Conditions shall be null and void, such will be removed or substituted. In any case, the void declaration would not affect the validity of the rest of the clauses in such specific conditions.
9.- Applicable law and jurisdiction
These General Conditions are governed by and interpreted in accordance with the laws of Spain.
In the event of any dispute or any arising disagreement between the parties over the interpretation or content, the parties agree to submit any differences to the competent courts of Spain.
Do you have any doubts about the services we offer or about these General Conditions? Contact us via the website or send us an email to email@example.com
This project has been co-financed by the European Union’s Horizon 2020 program.