Rb. Noord-Nederland - C/ 18/189406/HA ZA 19-6

Rb. Noord-Nederland - C/ 18/189406/HA ZA 19-6
Court:	Rb. Rotterdam (Netherlands)
Jurisdiction:	Netherlands
Relevant Law:	Article 4(2) GDPR Article 9(1) GDPR Article 9(2) GDPR
Decided:	12. 12. 2019
Published:	13. 12. 2019
Parties:	Erasmus University Medical Centre Rotterdam
National Case Number:	C/ 18/189406/HA ZA 19-6
European Case Law Identifier:	ECLI:NL:RBROT:2019:9757
Appeal from:	n/a
Language:	Dutch
Original Source:	de Rechtspraak (in NL)

The Rotterdam Court of First Instance forbids the disclosure of a deceased person's genetic data, which had been processed for the purposes of medical-scientific research.

English Summary

Facts

The plaintiff asked from the Erasmus University Medical Centre Rotterdam (“EUMCR”) to provide her the DNA material of a person died in 2018 alleging that this person was her father. The deceased man had participated in a medical-scientific research at the EUMCR, prior to which he had filled in a “patient consent form”. According to this form, he expressed his wish that his body material would be treated confidentially. The EUMCR refused to provide the plaintiff the DNA material claiming that:

• there is no legal basis under which it is obliged to provide this material,
• the man’s wish had been expressed unambiguously, thus such a disclosure would contravene the GDPR and
• it is bound by professional secrecy.

Dispute

The Court had to balance the plaintiff’s right to personality which includes her right to know her parents and the right of the deceased man and his family to privacy which is here protected by the EUMCR’s duty of confidentiality.

Holding

The Court went through this balancing exercise and first invoked Recital 1 GDPR and Recital 4 GDPR and the definition of processing under Article 4(2) GDPR.

Then, it noted that according to Article 9 GDPR and Recital 35 GDPR genetic data must be protected as sensitive data. The man’s consent to processing was only referred to the purposes of the research he participated in. Further, none of the requirements in Article 9(2) GDPR is fulfilled.

The Court concluded that in this case the interest of the EUMCR must outweigh the plaintiff’s interest and the EUMCR must not provide her the DNA material.

The Court rejected the plaintiff's claim.

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English Machine Translation of the Decision

The decision below is a machine translation of the original. Please refer to the Dutch original for more details.

DECISION

The plaintiff states that DNA testing on body material is currently the only (real) possibility to determine whether the person from whom this body material originates is her biological father. He has never acknowledged her. This man died in 2018. He suffered from epilepsy and during his life participated in a medical-scientific research of the Erasmus Medical Centre, defendant. At the request of the hospital, he provided body material for this examination. Prior to this examination, the man filled in a form, a 'patient consent form', in which he was promised, among other things, that his body material would be treated confidentially. The hospital invokes its duty of confidentiality, with reference to the General Data Protection Ordinance (AVG), among other things. The following is the starting point for the assessment. Fundamental rights such as the right to respect for private life, the right to freedom of thought, conscience and religion and the right to freedom of expression are based on a general personality right, including the right to know from which parents one descends. This right is laid down internationally in Article 7 of the Convention on the Rights of the Child, to which the Netherlands is a party. This right is not absolute and must give way to the rights and freedoms of others when these weigh more heavily in the particular case (HR, 15 April 1994, NJ 1994, 608, LJN: ZC1337). With due observance of the above, a balance of interests will have to be made in order to determine whether the plaintiff can demand the cooperation of the hospital in order to exercise his right to know from whom she is descended if the confidentiality obligation is breached. The right of the man and the other family members involved to protect their privacy also plays a part in this weighing up of interests.
Locations

Judgement
COURT ROTTERDAM

Trade and port team

Case number / role number: C/10/583910 / KG ZA 19-1062

Judgment in interlocutory proceedings of 12 December 2019

in the case of

[name of plaintiff],

residing at [domicile of the plaintiff],

plaintiff,

Attorney at law P.M. de Vries in Amsterdam,

at the rate of

the foundation

ERASMUS UNIVERSITY MEDICAL CENTER ROTTERDAM,

established in Rotterdam,

defendant,

attorney at law A.M. den Hartog-de Visser in Rotterdam.

The parties will hereinafter be referred to as [plaintiff's name] and EUMCR.

1 The proceedings
1.1.
The course of the procedure is clear:

-the subpoena of 24 October 2019, with productions;

-the productions of EUMCR;

-the oral procedure of 28 November 2019;

-EUMCR's written pleading.

1.2.
Finally, a judgment has been issued.

2 The facts
2.1.
The [name of the plaintiff] was born on [date of birth of the plaintiff] in [place of birth of the plaintiff]. Her mother is [name mother plaintiff] (hereinafter: the mother of [name plaintiff]).

2.2.
On [date of birth] was born Mr. [name man] (hereinafter: Mr. [name man] ). Mr. [name man] died on [date of death].

2.3.
The [name of the plaintiff] has never been recognized by a man, not even by Mr. [name of the man]. She has (therefore) no legal father.

3 The dispute
3.1.
name of the plaintiff] claims that the judge in preliminary relief proceedings should declare the judgment enforceable on a provisional basis: EUMCR condemns to send within fourteen days after service of the judgment to be rendered in this matter the body material taken from [name of man], born on [date of birth] and deceased on 9 October 2018, primarily by courier to Verilabs (Gouda) and alternatively to an institution to be chosen by EUMCR that specialises in family law investigations, in order to carry out an investigation into the presence of DNA material and subsequently a paternity examination, on pain of a penalty of € 15.The EUMCR will pay a fine of € 000 for each day or part of a day that EUMCR does not comply with the judgment to be given in this matter;
Orders EMC to pay the costs of the proceedings. 

3.2.
The [name of the plaintiff] - summarized - forms the basis of the following statements:

-At the time of the birth of [name plaintiff] the mother of [name plaintiff] had a relationship with the lord [name man];

-Despite the fact that [name plaintiff] has never been recognized by the Lord [name man], she has often had contact with him and his relatives over the years;

-According to the mother of [name plaintiff] the lord [name man] [name plaintiff] actually wanted to acknowledge but was always afraid that the mother of [name plaintiff] would demand maintenance from him; because of the latter recognition of [name plaintiff] by the lord [name man] did not occur during his life;

-After the birth of [name of the plaintiff] Mr. [name of the husband] had five more children with two other women than the mother of [name of the plaintiff], namely twins born on [date of birth of twins 1] and twins born on [date of birth of twins 2], whose mother is [name of wife 1], and a son born on [date of birth of son] 2010 (hereafter): Of these five children, only [name of son] is recognised by Mr [name of husband];

-Because there are no obstacles to the determination of the parenthood of [name of plaintiff] as referred to in Section 1:207 subsection 2 of the Dutch Civil Code, she submitted an application to the District Court of Amsterdam on 5 (or 6) August 2019 for a judicial determination of the parenthood of Mr [name of husband];

-In the medical data of Mr. [name of man] [name of plaintiff] has [name of plaintiff] found documents concerning 'The ACES-study: epilepsy caused by antibodies that belong to the body'; these documents are part of a consent form signed by Mr. [name of man] and by the researcher that dates from 22 July 2016; the other documents show that this research is controlled by EUMCR; information about this research shows that blood has been taken from Mr. [name of man] and, if possible, also cerebrospinal fluid as part of the standard treatment; it is also indicated that the blood and the (possible) cerebrospinal fluid will be stored for fifteen years;

-As far as known by [name of plaintiff] no other DNA material of Mr. [name of husband] has been preserved;

-The paternity procedure initiated by [name of the plaintiff] can only succeed, if it challenges the outcome of a DNA investigation; there are no other ways to get more than summary evidence that Mr. [name of the plaintiff] is the father of [name of the plaintiff]; for example, there are no pictures with [name of the plaintiff] on them together with Mr. [name of the plaintiff] or cards or letters he has sent to [name of the plaintiff]; Although there are statements by sisters of Mr. [name man] that they have never had any doubt that Mr. [name man] is the father of [name plaintiff], it is questionable whether that fact is sufficient or at least relevant evidence for the success of the paternity procedure; [name son] , the only child recognized by Mr. [name man], is willing to cooperate in a DNA test, but his mother, Mrs. [name wife 2], does not want that;

-As can be seen from, among other things, HR 15 April 1994, ECLI:NL:HR:1994:ZC1337, NJ 1994/608 (Valkenhorst), the general law of personality is based on the right to know from which parents one descends; this right has also been internationally recognised, namely in Article 7 of the Convention on the Rights of the Child and in Article 8 of the Convention for the Protection of Human Rights and Fundamental Freedoms, to which the Netherlands is party;

-The [name of the plaintiff] therefore has a very great interest in an investigation into the presence of DNA-material of Mr. [name of the man] in the blood taken from Mr. [name of the man] during the above-mentioned epilepsy investigation and (possible) cerebrospinal fluid taken from Mr. [name of the man] and, in so far as this DNA-material is present, in a DNA-kinship investigation after taking her own DNA-material;

-In the balancing of interests to which the Interim Injunction Judge is bound, the interest of EUMCR must outweigh that interest by [name of plaintiff];

-name of the plaintiff] has an urgent interest in carrying out the DNA-testing on the aforementioned removed body material of Mr. [name of the man], since Mr. [name of the man] died on 9 October 2018 and [name of the plaintiff] has so far not been 'recognised' as his heir; When it is necessary to await the outcome of proceedings on the merits and subsequently the outcome of the DNA investigation and the judicial paternity determination, there is a good chance that the part of Mr. [naam man]'s estate to which [naam plaissees] is entitled has been lost by the other heir(s).

3.3.
EUMCR puts forward a defence and concludes to reject the claim, with an order that [name of the plaintiff] be ordered to pay the costs of the proceedings.

3.4.
To this end, EUMCR - in summary - puts forward the following arguments:

-There is no legal basis on the basis of which EUMCR is obliged to provide the requested material;

-There is no question of any form of (presumed) consent of Mr. [naam man] with this provision;

-In addition, the provision by EUMCR of this body material would contravene the provisions of the General Data Protection Ordinance currently in force;

-In addition, EUMCR's duty of professional secrecy also precludes the disclosure of Mr. [name of man]'s body material requested; this duty of professional secrecy also applies after the death of the person from whom the information originates;

-A balance of interests may not lead to a different result; the confidentiality that EUMCR must observe is also prompted by a great social interest that is involved in the performance of medical scientific research; in contrast to that great social interest of EUMCR, only the interest of [name of the plaintiff] in knowledge of her origins plays a role; that [name of the plaintiff] would also have had no health interest in her claim, nor has it become apparent.

4 The assessment
4.1.
Leaving aside whether [plaintiff's name] in this case actually invokes a will of Mr. [man's name] during his lifetime to acknowledge [plaintiff's name], this will did not emerge from the documents that have been submitted. This will of Mr. [name man] to acknowledge [name plaintiff] has therefore become insufficiently plausible.

4.2.
The following is the starting point for the assessment. The general personality right underlying fundamental rights such as the right to respect for private life, the right to freedom of thought, conscience and religion and the right to freedom of expression also includes the right to know from which parents one descends. This right is laid down internationally in Article 7 of the Convention on the Rights of the Child, to which the Netherlands is a party. This right is not absolute and must give way to the rights and freedoms of others when these weigh more heavily in the particular case (HR 15 April 1994, NJ 1994, 608, LJN: ZC1337). In this case this right of [name of the plaintiff] is counterbalanced by the right of Mr. [name of husband] and the other family members involved to protect their personal privacy. This right is protected by EUMCR's duty of confidentiality.

It turned out to be insufficient that the submitted body material of [name of man] was submitted by him within the framework of a medical treatment agreement within the meaning of Section 7:446 et seq. of the Dutch Civil Code. In the preliminary opinion of the judge in preliminary relief proceedings, the provisions of Section 7:457 of the Dutch Civil Code regarding the confidentiality obligation to be observed in the execution of the medical treatment agreement towards the patient are therefore not applicable. However, EUMCR's duty of confidentiality in the present case follows from Regulation (EU) 2016/79 of the European Parliament and of the Council of 27 April 2016 on the protection of individuals with regard to the processing of personal data and on the free movement of such data and repealing Directive 95/46/EC (General Data Protection Ordinance/DSA) (see below 4.9), which has been applicable since 25 May 2018.

4.3.
The balance of interests to be carried out in this case should first of all take into account the aforementioned right of Mr. [name] and his other family members concerned to privacy. In that connection the Court considered as follows.

4.4.
Mr. [name of husband] has since passed away. EUMCR has not disputed that the sisters of Mr. [naam man] never had any doubt that Mr. [naam man] is the father of [naam plaiseres]. Since the documents at issue do not show the opposite either, it has become sufficiently plausible for the judge in preliminary relief proceedings that these sisters do not regard the claimed release of their brother's DNA material to determine whether [name plaintiff] is his daughter as an invasion of their personal privacy. The conclusion is that under these concrete circumstances the right of [name of the plaintiff] to know from whom she descends, prevails over the right of Mr. [name of husband] and the other family members involved to protect their private life.

4.5.
The next question is whether this also justifies that the confidentiality obligation of EUMCR must be broken.

4.6.
The importance of [plaintiff's name] has already been discussed above.

4.7.
With regard to the content of EUMCR's duty of confidentiality and the interest that this duty serves to protect, the Court in preliminary relief proceedings considered as follows.

4.8.
Mr. [name man] suffered from epilepsy, this is not in dispute, and at the time he participated as a test subject in a scientific study into epilepsy.

4.8.1.
Prior to his participation in this research, Mr. [name man] signed a form with the title on 27 July 2016:
"Patient consent form
The ACES study: epilepsy caused by the body's own antibodies".
The statements in this consent form for which Mr. [name man] has 'signed' include the following:
"I have read the information letter for the test subject. I could ask additional questions. My questions have been answered enough. I had enough time to decide whether or not to participate.
(…)
I consent to the use of my data and body material for the purposes set out in the information letter.
I consent to the retention of my research data 15 years after the end of this research.
I do/do not give permission to keep my body material 15 years after the end of this research, so that in the future it may be used for research as described in the information letter.
I want to participate in this study."

4.8.2.
The information letter that Mr. [name man] declares to have read because of his signature of this consent form reads - quoted where relevant - as follows:
"The ACES study (Epilepsy caused by endogenous antibodies)
Dear Sir/Madam,
We kindly ask you to participate in a medical-scientific research (see title). You decide for yourself if you want to participate. Before you make that decision, it is important to know about the research. Please read this information letter carefully. (...) Also read the general brochure. It contains a lot of general information about medical research. (…)
This research is carried out in a number of hospitals and epilepsy clinics in the Netherlands, controlled by the Erasmus Medical Centre, Rotterdam.
1 What is the purpose of the study?
In recent years, several new diseases of the brain have been discovered. These
are not common, but they are treatable. Patients with these diseases have
special substances in their blood that cause the disease, antibodies. This can cause all kinds of
complaints arise: epilepsy, changed behaviour, excessive movements and even
coma. These complaints can occur alone or in combination. You will be admitted to the hospital/
in this facility because you have epilepsy. We think that there are known and still
are unknown antibodies that can cause epilepsy. In this study, we will examine
looking for antibodies (known and unknown) as a cause of epilepsy.
(…)
8 What happens to your data and body material?
The general brochure explains that the researcher collects data about you and uses them to
confidential. This means that a limited number of people will use your data for the
to see the research. These persons are directly involved in the investigation and are entitled to have access to the information.
use data only for the purpose of this investigation. They may disclose such data only for the purposes of the investigation.
without mentioning your name or other personal data about you. Your identity
so remains a secret. The researcher saves your data body material with a code.
This means that on the study documents and materials, instead of your name, there is only one code.
letter-digit code. Only the researcher keeps a list of which letter-
number code to which name belongs.
After the study, the data is stored for 15 years. This is necessary in order to be able to do everything properly.
check. We also want your coded blood and (possible) cerebrospinal fluid for 15 years.
keep it. For the purpose of using your data and material for other surveys that are
to antibodies and epilepsy. This is to make the disease even better in the future.
to study. These studies therefore have the same purpose as the study for which they are intended.
you are now being asked. The data and body material will not be used for
research into another disorder or problem. It goes without saying that the
confidentiality that we have described above apply. On the consent form
you can tick separately whether you agree to the storage of the blood and (possibly) cerebrospinal fluid.
(…)”.

4.8.3.
The general brochure referred to in the information letter is the brochure from the Ministry of Health, Welfare and Sport with the title
"Medical research General information for the subject"
This brochure reads - quoted where relevant - as follows:
"You have been asked to participate in a medical-scientific research. This brochure provides general information about this. The information will help you decide whether you want to take part in the study. You can decide for yourself. Please read the brochure carefully before making your decision.
(…)
What happens if you do want to participate?
If you want to participate, sign a statement. This has a declaration of consent. With your signature, you say that you voluntarily participate in the research. (…)
(…)
What are your rights as a test subject?
As a subject, you have rights. These are laid down in the law. The most important are:
(…)
Right to the protection of your data
During the investigation, the researcher collects data about you. This data remains confidential. Your data will be given a code, and your name will be omitted. You will never find your name in a report about the study. Read more about this on page 13 under the heading 'What happens to your data? ‘.
(…)
What happens to your data?
Information that the researcher collects about you during the research remains confidential. The researcher stores your data with a code. This code is used in reports about the research. Only the researcher knows which code you have.
Reliability
A few other people can see your data. These people check whether the survey is good and reliable. (…)
People who can see your data are, for example:
-the research team
-the manufacturer of the product under investigation
-the ethics committee
-the security committee monitoring the investigation
-the Health Care Inspectorate
(…)”.

4.9.
As stated above, the General Data Protection Regulation entered into force on 25 May 2018.

4.9.1.
Recitals 1 and 4 of the General Data Protection Ordinance are the first to be mentioned:
(1) The protection of individuals with regard to the processing of personal data is a fundamental right. Article 8(1) of the Charter of Fundamental Rights of the European Union ('the Charter') and Article 16(1) of the Treaty on the Functioning of the European Union ('TFEU') confer on everyone the right to the protection of personal data concerning them.
(…)
(4) The processing of personal data must be for the benefit of mankind. The right to the protection of personal data is not an absolute right, but should be considered in relation to its function in society and should be weighed against other fundamental rights in accordance with the principle of proportionality. This Regulation respects all fundamental rights as well as the freedoms and principles recognised in the Charter as enshrined in the Treaties, notably respect for private and family life, home and communication, protection of personal data, freedom of thought, conscience and religion, freedom of expression and information, freedom to conduct a business, the right to an effective remedy and to a fair trial, and the right to cultural, religious and linguistic diversity.

4.9.2.
Pursuant to the AVG, the 'processing' of personal data must be based on a basis that justifies processing. This term 'processing' is defined in Article 4 under 2 of the AVG:
any operation or set of operations which is performed upon personal data or set of personal data, whether or not by automatic means, such as collection, recording, organisation, structuring, storage, adaptation or alteration, retrieval, consultation, use, disclosure by transmission, dissemination or otherwise making available, alignment or combination, blocking, erasure or destruction of data
If the party conducting a scientific examination of the body material of Mr. [name of man], EUMCR shall, in the preliminary ruling of the Interim Injunction Judge, be deemed to be the processing party within the meaning of this article.

4.9.3.
Article 9 of the AVG contains a regulation for the 'processing' of special categories of personal data. This includes genetic data. See in that respect recital 35 of the GCPSC:
(35) Personal data on health should include all data that relate to the health status of a data subject and that provide information on the physical or mental health status of the data subject in the past, the present and the future. This includes information on the natural person collected in the context of registration for, or provision of, healthcare services as referred to in Directive 2011/24/EU of the European Parliament and of the Council (9 ) to that natural person; a number, symbol or characteristic attributed to a natural person which is a unique identifier of that natural person for health purposes; information resulting from the testing or examination of a body part or substance specific to the body, including genetic data and biological samples; and information on, for example, disease, disability, disease risk, medical history, clinical treatment or the physiological or biomedical condition of the person concerned, regardless of its source, such as, for example, a doctor or other health professional, a hospital, a medical device or an in vitro diagnosis.

Pursuant to Article 9 paragraph 1 of the GCC, it is prohibited to process genetic data unless one of the conditions referred to in Article 9 paragraph 2 under a-j of the GCC is met, such as the consent of the person concerned (under a), a vital interest of this person or of a third party as referred to under c (as it reads), or the consent of the person concerned (as it reads), or the consent of a third party as referred to under a-j of the GCC is not required: the processing is necessary to protect the vital interests of the data subject or of another natural person if the data subject is physically or legally incapable of giving his/her consent), an important public interest (sub g) or processing of the data that must be necessary for a medical diagnosis (sub h).

4.9.4.
The provision of the DNA material of Mr. Berkul claimed by [name of plaintiff] to enable her to find out whether she descends from Mr. Berkul cannot, in the preliminary relief judge's opinion, be based on any of the conditions referred to in Article 9 paragraph 2 under a-j of the AVG, so that EUMCR is prohibited from providing this DNA material in the manner claimed by virtue of Article 9 paragraph 1 of the AVG.

4.9.5.
EUMCR can therefore only be forced to provide Mr. [naam man]'s DNA material at an advanced stage, if the aforementioned interest of [naam plaintiff] in knowing whether she descends from Mr. [naam man] should prevail over the above-mentioned interest of EUMCR in confidentiality. See recital 4 of the AVG cited above.

4.10.
The rationale of the duty of confidentiality of a care provider during a medical treatment is to prevent the sick from being discouraged from seeking medical assistance because of the fear that what would turn out to be or would be entrusted to the care provider could become public if its secrecy had not been ensured. As said, the processing by EUMCR of the body material of Mr. [name of man] was not part of a medical treatment but of medical-scientific research. For example, the permission of Mr. [name man] that follows from the permission form filled in by him does not relate to a medical treatment that he had to undergo but to a medical examination in which he would participate and in which he actually participated. In the preliminary ruling of the Court in preliminary relief proceedings it therefore goes too far to assume that breach of EUMCR's duty of confidentiality in this case could deter patients from seeking medical assistance from EUMCR. The risk lurking in the event of a breach of the duty of confidentiality that applies in the context of medical scientific research is much more that the willingness of future persons (patients) to participate in this research will be adversely affected. This risk is even greater if, as in the present case, the participant has been expressly asked to give his consent prior to participation in the study and has been promised that his body material to be examined will be treated with the utmost confidentiality. Therefore, in the preliminary ruling of the judge in preliminary relief proceedings, there is a good chance that the willingness of people to cooperate in medical research would be seriously jeopardised if EUMCR were to be forced to breach its confidentiality obligation. Where scientific research is one of the core tasks of EUMCR, it has thus been given the overriding importance of EUMCR's duty of confidentiality.

4.11.
Against this obvious interest of EUMCR in secrecy is, as said, the interest of [name of the plaintiff] to know whether she descends from Mr. [name of husband]. In the preliminary ruling of the Court in preliminary relief proceedings this interest of EUMCR must weigh more heavily, taking into account that for the time being it cannot be excluded that an investigation of persons other than Mr. [naam man], whether or not in combination with statements from persons close to Mr. [naam man] and/or certain written documents, will be sufficient for the District Court of Amsterdam to establish the parenthood of Mr. [naam man]. The claims of [name of the plaintiff] are therefore rejected.

4.12.
If the unsuccessful party is ordered to pay the costs of the proceedings, the [name of the plaintiff] will be ordered to pay the costs. Until this judgment, these costs on the part of EUMCR are estimated at:

Registrar's fee € 639.00

lawyer's salary € 980.00

total of € 1,619.00.

5 The decision

The judge in preliminary relief proceedings
rejects the claims;
orders [the name of the plaintiff] to pay the costs of the proceedings, which until this order are estimated on the part of EUMCR at € 1,619.00;
declares this order for costs to be enforceable as a stock.
This judgment has been rendered by A.F.L. Geerdes and pronounced in public on 12 December 2019.
901/676