Arne Van Der Vurst, Glenn Wagemans, Jurgen Wens, Julie Van Gansewinkel and Matthias Declercq discussed the topic of a worldwide DNA database on a blog (https://levmol.wordpress.com/) for the past months. This document describes why we discussed this theme, what a DNA database is, what the arguments for such a project are and my personal view on the matter.
The statement blog is linked to the master’s theses in industrial science, biochemistry of
five master students from Group T International University College Leuven, Belgium. All five students have a internship in molecular biology, therefore the theme of DNA databases was fitting and interesting. In principal an DNA database is a collection of DNA sequences, obtained from different people, held in one particular place (Parliamentary Office of Science and Technology. 2006). How the DNA is taken, investigated for person specific information or how the information is used is dependent from the database itself. Our idea was to create a database with the DNA of everybody on earth and to use it for crime fighting, victim identification, medical investigation, effective organ donor searching, family reunification and others. Before starting a new project it is
always interesting to look at similar project already existing. Like the NDNAD
(national DNA database) of Great-Britain, the NCIDD (National Criminal
Investigation DNA Database) of Australia, the Danish Newborn Screening Biobank
of Denmark, databases in the Netherlands, France, the US and even Belgium (Parliamentary Office of Science and Technology. 2006; yourgenome.org; .Crimtrac; International Debate Education Association 2011) Although not all of these databases are
discussed on the blog there is an important lesson to be learned from them. They are all used fro crime fighting and all of them are targets for a lot of criticism. Lets start with the positive things, they all work in a similar manner. They are managed by an independent office and only police can insert data. Only the police can request data when an edict is present. The data is obtained from people arrested for a crime, not necessarily convicted, older then eighteen or convicted for a crime before. The DNA is usually taken with a mouth swap and the DNA is send to a lab where the sequence is investigated. The DNA code inserted in the DNA database gives information about the gender and several person specific short tandem repeats but not about genetic disorders. Several of these databases are reasonably big which makes them a suitable plateau for creating an even bigger database (Parliamentary Office of Science and Technology. 2006; yourgenome.org; Crimtrac; International Debate Education Association 2011). Seems simple enough, take DNA, let it be investigated, import the data and consult when necessary. Why would you start a new project if big projects already exist and can just be expanded? Quite simple, the
bigger they are the bigger the problems and here the downsides start. Although they use a series of repeats mistakes can unfortunately happen. As mentioned on the blog the technique for DNA matching is not sacred, nothing is infallible. There is even a bigger problem with errors in inserting the data, inserting the data in the wrong file, accidently deleting information or other mistakes make it possible to pinpoint a completely innocent person to a crime (The telegraph 2007; Guardian.co.uk. 2010; DPIC 2010). An argument to defend the database and its use for crime fighting is that there is an easy solution to this problem. In Australia they use a two authorization system, meaning that for every deletion or insertion of data two persons need to be logged on the computer checking the data. Also all changes, visits or searches on the database are recorded (Crimtrac). Although this means a one person job becomes a two persons job and I don’t believe a system will ever be 100% waterproof, this may be one of the best alternatives. But even then looking for a DNA match can still result in a false match or a list of possible matches, meaning you can use the technique only to narrow the list of suspects down to a minimum. The second
problem is not the processing of data itself but the availability of the data. There is proof of police forces that failed to submit the data of serious offenders like murders and rapists, suggesting a lack of discipline and good working control systems (Guardian.co.uk. 2010a). Even a bigger problem for the availability of data is the current legislation. It is just too complex. There is a big difference between countries and even between states of one country. One of the differences is the right of offenders, for example in Great-Britain only
the small offenders don’t have to give an DNA sample while in Belgium no one is obligated to give his or her DNA (Parliamentary Office of Science and Technology 2006; Het Nieuwblad 2005). Other differences can be the collection, storage and use of information from the database, like in Australia where there are eight different legislation (Crimtrac). In my opinion this is still the biggest obstacle to overcome, considering that even on a one country basis there isn’t always an agreement possible, like in Belgium that keeps on setting a stronger record for government forms or even the possibility to debate, like
in Libya or China. Than how can we expect one legislation for the whole world that is acceptable and manageable for everyone? I don’t know what the solution to this problem is, maybe we can start with an European database that then later merges with that of Australia, the US and others. The next problem is that of privacy, as stated in the blog even when you voluntarily give your DNA to a database it can prove difficult to get out of it (guardian.uk.com. 2010b). Supposing you have committed a crime and your information was incorporated in a database you will even never get out of it, unless there are jurisdictional problems or mistakes when imputing or deleting data of course. The biggest fear of the people is not being in such a database, it is the uncertainty that the data will only be consulted by discreet policemen and not future neighbors, employers or pharmaceutical companies. But let’s face it, how much privacy do we have left. The banks, assurance companies, the government, police, internet and mobile providers, employers, they all already know pretty much everything about you. As said in the blog, privacy is declining since the years of first global terrorism and most likely privacy will keep on declining. Maybe we should do what we are good in since we exist, namely adapting and even benefitting from, at first disadvantageous, new situations. Personally I don’t think we’ll have much of a chose, we will have to adapt, I think more and more countries will decide to force the people in giving more and more private information. Like in Denmark, where the entire population is obligated to give their DNA to incorporate in an DNA database form birth (International Debate Education Association 2011). There is one fact in this privacy issue I have not mentioned up and till now. By solving the previous problems of the too complicated legislation it is also possible to overcome much of the current privacy problems. Stating clearly who can take DNA from who, who can access the data and why and who can get back out of the database. Preferable on an international level can, in my point of view, set the database on its way. The next downside is the economical one, maintaining, expanding and supervising an DNA database literally as a high price. As example the NDNAD had an expense of 4,910,293 euro in 2008/09 with about 3million people in the database (National DNA database, annual report 2007-09). Today the world’s population is about 7miljard this would mean 11miljard euro assuming that the cost of a DNA database is split evenly over the amount of people in it. Yes this is a lot of money, definitely for poor countries, that then probably will not be capable of making their contribution to a worldwide DNA database. But as stated in the blog in the total picture of a governments costs this isn’t so expensive even not when only the justice department is considered (Wikipedia 2011). Of course there is the debate of cost efficiency, although this wasn’t discussed in the blog jet, it seems fair to conclude that this can still improve significantly. Firstly because a bigger database will result in a bigger chance that crime offenders will be in it. Secondly because a large part of the errors can be excluded, like stated above. The last downside is the current use of DNA databases, most of them are only used for crime fighting making it difficult to asses the full potential of such an idea. The Danish Newborn Screening Biobank is one of the only where the data is also used for medical reasons (International Debate Education Association 2011). This we can only regret, not only research for genomic disorders would greatly benefit from this kind of data but also establishing family relationships (Froyen G. et al. 2008; Volkskrant 2011).
Making an DNA database a great tool for several applications that is just not used at full potential. It really is a pity that existing databases like in Belgium can’t be managed properly but they seem to find it more appealing to create new databases around ongoing investigations instead of first solving the problems of the existing databases and letting the new ideas mature before putting wasted energy, time and money in them (Het Nieuwsblad 2005; Honden en puppies 2010). To me, it is really just a matter of setting priorities and if
the general public is turned against the current DNA databases not to feel the need to look for new flashy ideas to win the people over, like most politicians tend to do. We did not discuss everything on the blog but on several important issues I can now draw my conclusions. Like the current utility of DNA database, the legal aspect, the issue of privacy, the financial aspect and the prospect of DNA databases.
- Currently the database isn’t used efficient, there are to many errors to be fixed, to little effort to overcome these issues and to much effort to create new projects that wont be of any or little use for the upcoming years.
- There is a lack of discipline among the people currently taking DNA and inserting the data. There is a need for proper sensitization and training.
- Legally there is to much of a mess to make a worldwide database, even on European level it will prove to be very difficult. Nonetheless a good legislation is the base for a good DNA database. In this legislation the following will certainly need to be stated: Who can take DNA and for which reasons are they allowed to? When is the data incorporated in a database, how it is this supposed to be done and controlled? When can your data get out of such a database? Who can manage the database? Who can get access to the data and do they need approval, if so, from who? What are the safety measures to insure no unauthorized acts on the database and how are these measures controlled and by who? Of course this is only the part I can come up with, other matters will also need to be legalized. I believe that this will also solve many of the privacy issues against an DNA database.
- Managing and expanding the database is expensive, but every big project is. If the efficiency of the current databases could be increased it might be word the effort.
For me the future of the DNA database lies in the use of it on a higher level, not only
crime solving but also victim identification, genetic research, establishing family bonds and others. This not on national level only but on level of the continents. And then maybe, someday a worldwide DNA database.
References:
Crimtrac. NCIDD, protection of privacy. Internet, http://www.crimtrac.gov.au-/systems_projects/PrivacyandLegalSafeguards.html, consulted 12 February 2011
DPIC. Innocence: List of Those Freed From Death Row. Internet, 28 October 2010, http://www.deathpenaltyinfo.org/innocence-list-those-freed-death-row, consulted 15 may 2011
Froyen G. et al. (2008) Submicroscopic duplications of the Hydroxysteroid Dehydrogenase HSD17B10 and the E3 Ubiquitin Ligase HUWE1 are associated with Mental Retardation. Am J Hum Genet. 2008 Feb;82(2):432-43
Guardian.co.uk. (14 may 2010a). Police failed to submit DNA samples to database, report finds. Internet, http://www.guardian.co.uk/politics/2010/may/14/police-dna-samples-database-report, consulted 27 January 2011.
Guardian.co.uk. (13 may 2010b). Police Cameron will scale back database state. Internet,
http://www.guardian.co.uk/commentisfree/2010/may/13/id-cards-database-cameron-clegg, consulted 15 May 2011.
Het Nieuwsblad. België loopt beschamend achterop. (3 February 2005). Internet, http://www.nieuwsblad.be/article/detail.aspx?articleid=GQPC6GEI, consulted 15 may 2011
Honden en puppies. (6 October 2010). Belgische politie heeft sinds kort DNA databank van honden. Internet, http://www.hondenenpuppies.nl/opmerkelijk-honden-nieuws/belgische-politie-heeft-sinds-kort-dna-databank-van-honden/, consulted 15 May 2011
International Debate Education Association. Debate: National DNA database. Internet, 29 March 2011, http://debatepedia.idebate.org/en/index.php/Debate:_National_DNA_data-base, consulted 26 February 2011
yourgenome.org, National DNA database. Internet, http://www.yourgenome.org/ethics-/dnad/dnad_summary.shtml, consulted 28 October 2010
National DNA database, annual report 2007-09. Internet, http://www.npia.police.uk/en/docs-/NDNAD07-09-LR.pdf, consulted 19 March 2011
Parliamentary Office of Science and Technology. (25 November 2006). The national DNA
database. Postnote, 258: 1-4. Internet, www.parliament.uk/parliamentary_of-fices/post/pubs2006.cfm, consulted 28 October 2010
The telegraph. (25 November 2007). Innocents fear DNA database errors. Internet, http://www.telegraph.co.uk/news/uknews/1570531/Innocents-fear-DNA-database-errors.html, consulted 10 December 2010
Volkskrant. Onze handen: bijna identiek. (10 Februari 2011). Internet, http://zekerwaar.nl-/meuk/Volkskrant.pdf, consulted 15 May 2011
Wikipedia. United Kingdom Budget. Internet, 6 May 2011, http://en.wiki-pedia.org/wiki/United_Kingdom_budget, consulted 19 March 2011
Glenn Wagemans
Talking about a DNA database proved to be a more difficult task then first expected. There are a lot of problems surrounding such a database and in more fields then just ethics. One of the problems that struck me most is the maintenance and usage of a DNA database. One would think that upon founding of a DNA database there would be a well thought general plan or approach regarding this but with most of the current DNA databases, this isn’t the case. A lot of the errors regarding a DNA database have a human origin. The people who work with DNA databases are in most of the cases not the scientists one would expect but are simple clerks who don’t know half of what they are doing. Therefore, most of the problems with DNA databases are based on a bad data processing. If someone understands only a part of the subject on which he is working, errors are bound to occur. A problem lies also in the managing of these databases. These databases are in some cases managed apart from the police with a bad cooperation as result. Another problem with managing these databases is that most of them use experimental approaches. There is a lot more potential in most of the current databases. Bad managing gives the opposition valuable arguments against DNA databases which may lead to budget cuts and slower progress in the future. But a bad staff is not the only risk on failure for a DNA database. The DNA that is submitted in the databases is only a very small sample and contains mostly short tandem repeats. The chances of a mismatch with a DNA sample are not 1e13:1 as is generally believed but are 14000:1. This makes that in a big enough database, every sample will get several matches. The DNA databases are therefore not meant for pinpointing a random criminal out of a population but rather for supporting investigators in their search for suspects. In the USA, a DNA match in a database is not enough to convict someone. There should be enough statistical evidence as well to confirm this match before the jury decides to plead guilty. Unlike most people think, DNA on crime scenes can also degrade resulting in even smaller DNA samples and more chance on a mismatch. Another thing that should be taken into consideration is that if a person is a match, all the members of his family are also a match. In general, the results of a DNA database search should be interpreted with caution.
Another major problem lies in the legislation around DNA databases. In most countries, the laws around sample taking and sample storage are not perfect. Most of the current DNA databases are build up entirely out of criminals. Most countries have privacy laws, so DNA samples are only taken by the police when there is a serious offence. Because of this, only criminals who have committed already other crimes are kept in this database and people who have committed but a single crime and behave for the rest of their life can’t get out, not even if they want to. In most countries this makes it also impossible to generate a database of the whole population. Also the storage poses a problem. A lot of laboratories have a refrigerator full of DNA samples but are forbidden to process them. There are also countless of DNA samples that have been entered into a DNA database just to be deleted afterwards because of process errors. In Belgium, it is even so bad that 6000 samples are just waiting to be run through the database (containing only 2000 samples) but they can’t do so without the approval of a magister. One must also consider the benefits of these legislations. They exist for our own privacy. In a lot of countries you lose this privacy when you commit a crime but this personal data can and has been forced out of people with or without their knowledge, making them a subject in a DNA database of which they don’t want to be a part of. A lot of people are scared of scenario’s like this and are even more afraid that if someone has access to their data, this data will be abused. In Australia they worked around this problem and came up with a solution. They add DNA markers to every DNA profile in their database, indicating the nature of the committed crime, and they hide the personal information concerning this profile from the people using the database. As an extra safety measure, all the activities in the database are logged, so that every modification or deletion can be viewed later on. The system also requires two authorized users to confirm any changes and they use only scientific personnel to manage their database. Security measures like this should make all the misuse of information impossible.
A third and smaller problem is the cost of a DNA database. Momentarily, these databases cost a lot of money and high costs are not always a guaranty that the database will be used properly. A lot of people who are against a DNA database, are so because they simply don’t want to pay this price and think that this money could be spent better.
The final and biggest problem is the ethic side of all this. As said earlier, people want to keep their privacy. This is not only so for a DNA database to catch criminals but also for all other possible purposes off a DNA database. It would for example be incredibly useful to have a global DNA database so that every possible genomic variant can be mapped and that there can be a better understanding of genetic diseases and how to treat them. The main problem for such a global DNA database is that most of the people don’t want their DNA to be submitted into a database. This is so for scientific, medical, social and other reasons. It would be extremely useful to know beforehand when a person is going to have a genetic disease but most people just can’t or won’t handle this kind of information. In Denmark, they have such a database for everyone who was born after 1981 to test for Phenylketonuria and other diseases. A database such as this is great, the only problem is that it was forced on a lot of people. Perhaps this is the only way to ensure the possibility of great scientific and medical progress through a DNA database but do we really want to achieve this using such drastic measures?
From my point of view, I see a grand future for DNA databases but a lot of changes will have to be made. First of all, I think it is necessary that a DNA database is managed by scientists who know what they are doing. If it’s necessary that the current projects become smaller so that better data processing can occur, then so be it. The bigger the project, the better but there is no use for a big project that doesn’t work properly. There should also be a lot more freedom in the usage of a DNA database. Any ethical concerns here can be countered by building in controls and security checks to ensure that the DNA information in the database can’t be used for criminal or other non-related purposes. The legislation around DNA databases should also be better defined. At the moment, this legislation is different in every country. Perhaps a global legislation is in order here. As for the cost of a DNA database, this isn’t so high when compared to a whole state budget. Progress costs money and this money could turn out to be very well spent in the future. Last but not least there are ethical concerns. This is perhaps the most difficult part regarding DNA databases. As I see it, a lot of people who are against it know most of the time not much about the subject or are misinformed. Perhaps there should be more general awareness around this topic. If people stop thinking only about themselves, general progress could be made much faster and way more efficient.
Arne Van Der Vurst
Although much more is needed, it is probably safe to say that without DNA it is of no use to generate a DNA database, let alone a worldwide one. Gathering everyone’s DNA, analysing it and entering all information in this database, is the general idea. It all sounds pretty easy, but it won’t come to a surprise that it is not. Many questions arise when reflecting on the possibility to create a worldwide DNA database: What are the benefits of this worldwide DNA database? Would such database entail a great deal of expenses? Would we actually put it into use? Which are the possible applications? … All of these questions come to the same thing: whether this project would yield in total more benefits than costs, in other words would a DNA database be profitable for everyone?
The most important element of a worldwide DNA database is, as I stated before and as the name says it itself, the DNA. If we would now start this database, we would have to collect the DNA from people of all ages. To do so, everyone has to come in, which is not always very simple. We could for instance organise something like the elections were everyone is summoned, but this would take a lot of time and planning. Also everyone has to be in it, from the new-borns over the adolescents to the elderly people. So in the future, it would be the easiest to collect the DNA from new-borns, like they do already in Denmark [1]. In the more developed countries gathering DNA samples probably is a lot easier than in the less developed ones, due to the poverty, the dispersal of the people and the difficulties to travel around or the low medical care. This would also make it a lot harder to create a worldwide database.
But what about expenses?! One of the blogs stated that although the cost of National DNA database of the UK was almost 5 million euros, including expansion, maintenance, labour…, the budget for the ministry of justice was about 4.7 million euro [2]. Although this could be seen as a tone down of the expenses, in my opinion the expenses will be rather high, especially in the beginning when such database needs to start up. Not only the collection and analysis of all DNA samples, the accumulation of raw data, will take a lot of time and money, but also the whole proteomics and genomics computational infrastructure. Many people would be working on this project, resulting in high labour costs. Later on, once almost everyone’s DNA is in the database, this number could be decreased to the ones who maintain and update the database, although this will still be a large number. One of the highest costs are the ones for genome sequencing. Although prices are falling fast, the sequencing of a 3000 Mb genome still costs around $ 30K, although there are individual companies which can provide a while genome sequence for less than $ 20K, if not even less [3]. So the question is: who should pay for all this? Although this is a very interesting question, I won’t go into this aspect profoundly. I only want to state that although I don’t believe the people should be paying this, I do think it will be inevitable for the government to take measurements to make sure this database can and will be up to date, in other words to make sure they have enough money to pay for it. A possibility can be to ask researchers and officers a small fee to get access to the database, in order to be able to maintain the database.
If we would actually use the database is no longer a question in my opinion. As I worked on DNA during my internship, I noticed the effort the researchers have to make to collect DNA samples, how much paperwork is needed and how much time is consumed. Such DNA database would create a world of opportunities for them: more samples actually mean bigger control and case groups to study, not only of their country but also really easy of a certain region or of a certain age or gender.
Another advantage for them is that original DNA samples contain unlimited genetic information, making it possible to map every possible genomic variant, which could lead to easy screening for causes of various genomic disorders [4]. This could transcend all medicine to a complete new level, namely that of prevention and even personalised medicine [3]. This is only one of the possible applications of such worldwide DNA database. Another application is the one we see all over TV these days, for example in programs like NCIS and CSI, namely crime investigation. DNA evidence enables us to solve crimes more easily, not always by finding the one who is guilty, but also by proving someone’s innocence [5]. Even if they don’t find the perfect match, the identification of suspects in a quick and easy way, will save both time and money. The DNA database is of course of no use if every time some DNA evidence is found, some magistrate has to give permission to look for a match in the database, like it is now in Belgium [6]. Therefor legislation should change drastically.
Many more applications are possible, like for example parental tests [4].
The worldwide-part, being able to share this information with the rest of the world is also very advantageous, as today’s travelling and population mobility is higher than ever.
In the post “Innocent behind bars?!” I shortly mentioned the violator of the “Kempen”, who raped 17 girls and had two more attempts between august 2003 and January 2010. This weekend, it is all over the news: the police found out who the violator of the “Kempen” is. After analysing about 180 DNA samples of possible suspects, they finally got results. Both the first and the second expert opinion matched one of the suspects to the DNA profile of the offender. He was a match for 12 of these girls, but although no DNA was found on the other 7 girls, the mode of action seems to be the same [7]. This proves that also here in Belgium such database would be of great use.
I guess the aspect people are most concerned about is the violation of their privacy [8], although one could wonder whether this is really a violation. I think of this database as if it was like the blood transfusion centre here in Leuven: names linked to numbers and numbers linked to the samples. I agree that everyone who gives blood, does this voluntarily, but still they try to keep everything as private as can be. If we link medical information to the DNA, for example person 4549843 develops multiple sclerosis, MS, it would make it a lot easier to perform research since this would be a case-person instead of a control. So the information of genetic diseases should be added to the database, which makes it more private. But since there is only gain for all of us, it is my opinion that this doesn’t violate our privacy in a way we can’t handle it and it certainly doesn’t make all of us offenders. Nevertheless, you should be able to decide whether you want to know if you have a genetic disorder or not, if they find out, and be able to change this opinion at all times.
If you should be allowed to decide if your DNA can be used in medical studies, is something I’m not quite sure of. Although I believe that few persons will have problems with it, as long as their privacy is obtained as much as possible, it is still a risk to let them decide. Especially in the beginning, when there are no results of these worldwide database studies yet. For criminal investigation, it seems logical that there is no decision to make: everyone has to be in it.
I also believe no system is without bugs and therefor can be under attack, so it would be of high importance to have a great firewall and as said before different systems, so names and DNA can’t be linked directly.
Taking every aspect into account I can conclude that the worldwide DNA database needs to be up to date at all times, useful, user-friendly… but most importantly there can’t be any violation of the privacy in a way it hurts the people. I’m definitely pro such database, although I believe there’s still a lot of work to do. We’re not there yet. As one of the blogs stated, make sure one database is up and running, before you start another one [6]. So if every country start to develop their own DNA database first, it is only one step away of generating the worldwide database.
Julie Van Gansewinkel
References
[1] A complete database is possible.
[2] Money, money, money, is a database for a rich world?
[3] Costs of DNA Sequencing Falling Fast – Look At These Graphs! (March 5th, 2011) – Aaron Saenz
Costs of DNA Sequencing Falling Fast – Look At These Graphs!
[4] Alternative benefits
[5] Innocent behind bars?!
[6] Only in Belgium…
[7] Ontmaskerde serieverkrachter uit Mol pleegt zelfmoord
[8] Summary of the pro’s and contra’s
A Worldwide DNA Database Is Profitable for Everyone 
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