Security Restrictions benefit more than just Privacy Rights in Medical Databases

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When Verizon admitted they had shared customers’ personal phone conversations with NSA, it sparked a debate for tighter privacy restrictions for companies that have access to peoples’ medical personal information. While the information Verizon was sharing concerned national security, information regarding health conditions and genetic traits should not be shared with other people. The European Parliament is pushing a bill that would tighten medical database security. Tightened security will make it difficult for researchers to access these databases. Critics to the proposed bill claim that these restrictions will slow down scientific research, and inevitably cost people their lives (1). While the main issue concerns improving the security of medical databases, there may be unintended benefits that will come with the tightened security as well. The restrictions being pushed by European Parliament will not only protect participant’s information from getting into unwanted hands, but also make information more organized, more reliable, and increase communication between subjects and researchers which will be beneficial to scientific research.

All medical databases need to establish unity and organization, and tighter privacy restrictions will inadvertently establish organization. The process of De-Identification allows subjects, in medical databases, to become anonymous when their information is used in research studies. Its purpose is to protect subject’s private information, however there are differences in standards between the institutions that possess medical databases causing an inconsistency in regards to what information needs to be protected (2). The inconsistency in the De-Identification process causes great confusion when subjects’ information is passed between medical databases with different standards. For example, say a medical database requires names to be hidden, and then when the information is passed along to another institution their medical database requires the names of the subjects. This would result in a time consuming process in which names have to be added back to the correct information. Stricter privacy regulations has addressed this issue by offering a new identification system known as Pseudonymization. This process allows subjects to take on a pseudonyms, or fake names, in order to protect their real identity (2). This process will not only protect subject’s information, but it will allow researchers to have a standardized identification for a subject without using their actual name. This will save time, and make medical databases more organized when trying to locate a particular subject’s information.

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Tighter security will also increase the reliability of medical databases. Projects like IDASH can help institutions with medical databases organize and guide them through the process of tightening security. IDASH Projects specialize in gathering data analysis anonymously, and sharing data anonymously (3). The organization can instruct the researchers who use the databases how to collect and share data anonymously. IDASH’s instruction can ensure that medical research will not be slowed down under the new guidelines, and no mishaps will occur in the data when reformatting security procedures. The increase of security will also make it more difficult to change information in the database, however this will ensure that information is reliable especially through the simpler pseudonymization system. Tighter restrictions will hopefully prevent hackers from accessing data and manipulating it to throw off results. It’s important that medical data is accurate, and ensure the information stays accurate, subjects should have the right to view their own information and know what it is being used for.

Communication with subjects will play a key role in maintaining security, and ensuring reliability. Subjects need to be aware of what types of research their information is being used for. In the Nature article “Power to the People” the author advocates for a method known as “specific consent”, a process in which researchers must obtain consent from every subject before they are able to use their information in research. Nowadays researchers use a method known as “broad consent”, a process in which researchers obtain consent from a few subjects and their consent is supposed to be representative of all the subjects (4). Critics’ argue that this may take too much time and slow down research (4), however I feel a simple email sent by the researchers to the subjects would be an efficient way to achieve specific consent. One could also have subjects verify the information before their data is used to further ensure that the data is accurate. Not only will this allow subjects to consent for the use of their information, it will also give subjects a better understanding for what their information is being used for.

Many benefits can come from tightening the security on medical databases. Critics who say that the restrictions will slow down scientific research need to look at all the benefits. Organization, reliability, and communication are benefits of what can come from stricter privacy regulations. New methods like specific consent, and pseudonymization are just a few of the new features that will come from the bill proposed by European Parliament. People put trust into organizations that hold their information, and the least they can do is to make sure one’s information is safe in the company’s hands. Hopefully Europe can show nations around the world the improvements that come from tighter security restrictions and give the other nation’s confidence to join the movement.

Bibliography

1. 2013. Privacy in the Digital Age. Nature [Internet]. [2013 May 15, cited 2014 Jan 30] Volume 497, Issue 7449. Available from: http://www.nature.com/news/privacy-in-the-digital-age-1.12978

2. Kim, Natalie. 2013. Towards Trans-Atlantic Interoperability: Scientific Research and Privacy Under the EU Data Protection Regulation. Harvard Journal of Law &Technology (Jolt Digest) [Internet]. [2013 Aug 11, cited 2014 Feb 2]. Available from: http://jolt.law.harvard.edu/digest/legislation/towards-trans-atlantic-interoperability-scientific-research-and-privacy-under-the-eu-data-protection-regulation

3. Fox, Tina. 2013. IDASH Projects: Protecting Privacy and Patient Rights in the Name of Scientific Progress. News Center [Internet]. [2013 Sep 10, cited 2013 Feb 2]. Available from: http://ucsdnews.ucsd.edu/pressrelease/idash_projects_protecting_privacy_and_patient_rights_in_the_name_of_sc1

4. 2014. Power to the People. Nature [Internet]. [2014 Jan 15, cited 2014 Feb 3 2014] Volume 505, Issue 7483. Available from: http://www.nature.com/news/power-to-the-people-1.14505

Neglected Disease Treatments

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A report from the World Health Organization states that if all countries spend .01% of their annual gross domestic product on neglected diseases, 6 billion dollars would be accumulated for research (1). “Neglected tropical diseases (NTDs) are a group of chronic disabling infections affecting more than 1 billion people worldwide...NTDs contribute to an ongoing cycle of poverty and stigma that leaves people unable to work, go to school or participate in family and community life” (2). Kala-azar is an example of a popular neglected disease, and is second to malaria for being the most deadly parasitic disease. The disease, kala-azar, affects the people of India, Brazil, and Sudan through the bites of a sand-fly. The emergence of neglected diseases has been overshadowed by the growing research for larger diseases due to the fact that pharmaceutical companies receive more money from these more prominent diseases. Neglected diseases is an issue that have substantially been living under the radar and should be brought to the public eye with the help of the government and public.

Pharmaceutical companies can hold some fault for the scarcity of neglected disease treatments. “Today, drug development is confined almost exclusively to a consolidated and highly competitive multinational drug industry driven by profit and subject to the laws of a globalized market economy” (3). This illustrates that the more popular and profitable diseases hold a significantly higher ranking in the pharmaceutical system. “The most frequently voiced argument to explain or justify the pharmaceutical industry’s near-zero investment in drugs for tropical infectious diseases is the high development cost compared with the small expected financial return” (3). Pharmaceutical companies will only create drugs and treatments for diseases where they can receive some incentive for creating them. This incentive is mainly money, since neglected diseases primarily attack poverty stricken areas, pharmaceutical companies will receive no feedback from creating treatments for neglected diseases. This portrays an obviously important problem because without money to create drugs and treatments, pharmaceutical companies have no way to help neglected diseases. Although pharmaceutical companies have had little impact on the treatments for neglected diseases, PPP’s have also not been contributing to the research and treatments of neglected diseases like they should.

Another program created to aid the profit of neglected diseases are named PPP’s, which is an acronym for public-private-partnerships. These partnerships have turned out for the worse and have created a number of problems. The main reason these partnerships have failed is the lack of support from the government. Due to the fact that there are numerous public-private-partnerships, governments have a difficult time deciding which PPP to invest money in. These public-private-partnerships have just been recently created therefore have little experience. This is the cause for worry because people are afraid they will not properly deal with the money that they are given. “The general view is that PPPs are inexperienced in drug development, and may eat up public cash without delivering the tools we need, while the real experience and capability in drug development lies with multinational pharmaceutical companies” (4). This quote reiterates the view that these partnerships are not able to fund the research needed for neglected diseases. An individual partnership or company can not create the adequate support that neglected diseases need, therefore a combined effort is crucial for the development of treatments.

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The way that neglected diseases will receive the attention they need is to have a combined effort by the public and the governments of various countries. “The best hope of treating the world's most neglected diseases is for the public to accept responsibility for drug development, taking it out of the marketplace and into the public sector” (5). “There will need to be concerted political attention to make available the necessary financial and technical resources” (5). These two quotes reflect my opinion of what could be the solution to getting proper research and treatment for neglected diseases. The public needs to make more of an effort to show that they are interested with aiding neglected disease treatment research. By getting the public involved this will set a chain reaction for the government to also get involved. Once the government and the public are involved, money and aid for research will begin to increase. Like I said before, if country governments promise to spend .01% of their annual gross, 6 billion dollars would be raised to help aid neglected diseases. (1) ““Donors should ensure that there is adequate funding for the treatment and prevention of parasitic diseases and micronutrient deficiency;” and “governments and global health partnerships should ensure that this [funding] is integrated into public health campaigns by 2006”” (6). This quote explains perfectly the actions that need to be taken for neglected diseases to get the recognition they need. The goal is to increase donations through the increased involvement by the public, and to increase the budget for neglected diseases by the government.

Neglected diseases have ultimately been overlooked by more prominent diseases and need the combination of the public and the government to build up money so that it can be spent on research and treatments. A company or partnership will not get the job done, but a combined effort will help raise enough money that these neglected diseases need. Pharmaceutical companies can not hold the responsibility of finding treatments to neglected diseases in this situation because they receive no money or kickback from creating treatments due to the poverty that the diseases fester in. Neglected diseases may seem small compared to other popular diseases, but they still affect numerous amounts of people and cause death.


Bibliography

1. Hayden EH. 2014. Projects set to tackle neglected diseases. Nature (1st) [Internet]. [2014 Jan 09, cited 2014 Jan 30] Vol-505 Issue-7482. Available from: http://www.nature.com/news/projects-set-to-tackle-neglected-diseases-1.14474

2. Richter NR, Volkswagenstiftung TV. **Date of Publication**. About the Initiative [Internet]. **Edition**. **City**(**State**):**Publisher**; [**Last Updated**, cited 2014 Mar 6] . Available from: http://www.ntd-africa.net/

3. Trouiller PT, Torreele ET, Olliaro PO, White NW, Foster SF, Wirth DW, Pecoul BP. 2002. Drugs for neglected diseases: a failure of the market and a public health failure?. TM&IH (1st) [Internet]. [2002 Jan 13, cited 2014 Feb 02] Vol-6, Issue-11. Available from: http://onlinelibrary.wiley.com/doi/10.1046/j.1365-3156.2001.00803.x/full

4. Moran MM. 2005. A Breakthrough in R&D for neglected diseases: New ways to get the drugs we need. PLOS Medicine (302) [Internet]. [2005 Sep 08, cited 2014 Feb 03] 10(1371). Available from: http://www.plosmedicine.org/article/info%3Adoi%2F10.1371%2Fjournal.pmed.0020302

5. Yamey GY. 2002. The world's most neglected diseases. BMJ (1st) [Internet]. [2002 Aug 17, cited 2014 Feb 03] 325(7360). Available from: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1123710/6. Molyneux DM, Hotex PH, Fenwick AF. 2005. "Rapid-Impact Interventions": How a policy of integrated control for Africa's Neglected Tropical Diseases could benefit the poor. PLOS Medicine (1st) [Internet]. [2005 Oct 11, cited 2014 Feb 02] **Journal Info**. Available from: http://www.plosmedicine.org/article/info%3Adoi%2F10.1371%2Fjournal.pmed.0020336

Anti Antibiotics

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Flash back to the pre-penicillin era. A small bacterial infection, something that would today be easily treatable, might be fatal. Exposure to bacteria could be the end and you would have nothing to do about it. Now flash forward to today. Antibiotics are easily available, ready to fight our infections and help make us feel better. With this type of technology at our disposal, why would we hold it back? It’s this exact mindset that has put us in such a dilemma. As Wise says in British Medical Journal, “We cannot conceive a return to the pre-antibiotic days, yet the unbridled use of these agents in man and animals is inexorably propelling us in that direction”(1). Since antibiotics have become extremely overprescribed, bacteria are gaining resistance, and therefore organizations and researchers need to spread knowledge of this issue and limit the number of antibiotics available.

Humans have become extremely dependent on antibiotics. When they are sick, they go to the doctor and expect a prescription that will make them feel better, no matter what their symptoms actually are. Patients don’t realize that antibiotics are meant for bacterial infections, so they insist on a prescription for their viral infections also. This is pointless and just contributes to the growing resistance. According to the British Medical Journal, a majority of antibiotics are prescribed for the respiratory tract, where the vast majority of infections are caused by viral pathogens (1). Doctors need to be stricter in prescriptions. They need to be firm in saying no when the patient is insistent on antibiotics. Although they may feel bad morally for not doing what they are capable of doing to potentially make the patient feel better faster, they need to consider how much worse it would be if the human race gained complete resistance to antibiotics entirely. To add to this, Wise suggests that up to 75% of antibiotic use is of questionable therapeutic value (1). Antibiotics are too important for extreme cases, that if we wipe them out completely with minor cases we would not be ready to live with the consequences.

Humans are not the only ones who are being overprescribed antibiotics. Time magazine estimates that 80% of the antibiotics by weight used in the U.S. are given not to sick human beings, but to farm animals. Farmers give animals antibiotics to ensure their health and strength. The food industry argues that restricting antibiotics in livestock would lead to sicker animals and more expensive meat (2). On the contrary, it is easy to raise strong animals that people would be willing to eat and buy if you’re just going to pump antibiotics in them. However, these measures could be easily avoided in order to prevent the growing resistance. If antibiotics are the norm for these farm animals, doesn’t it make sense that they would eventually adapt to them and gain resistance? The European Union has already banned all antibiotic growth promoters in animal feed (2). American farmers should follow this lead by stopping automatically giving animals antibiotics, and instead use traditional farming techniques to ensure the animals’ strength.

In order to fight the resistance, we need to spread awareness. The dangers need to be told to doctors and farmers alike. People need to know the possible outcomes that may come from our antibiotic overuse. They need to see that we are doing this to ourselves, and that the result could be fatal. Research groups and organizations can promote the issue and let everyone see that this truly is a global issue on our hands. One solution for fighting this problem has been given by CBC News. They suggested that we take the focus off of fighting the use of recreational drugs and instead fight the unnecessary use of antibiotics. CBC News defines these recreational drugs as “illegal narcotics such as heroin and marijuana, illegal stimulants such as cocaine, and legal drugs that people take to relieve pain, reduce anxiety, induce euphoria etc” (3). They argue that the outcome that follows using antibiotics would be extremely worse than that of the misuse of recreational drugs. A potential suggestion for how to fight our dependence on antibiotics is user fees. CBC News quotes professor Anomaly, who suggests that we use these fees for the good of everyone by funding costly research into new antibiotics that are not patentable in the short-term. Anomaly also states his belief that “although individual patients and doctors perceive benefits from antibiotics, it would be better to reserve them for serious infections” (3).

Since we see the problem happening, we have no excuse not to stop it. We know what to do and we know the consequences, so it’s time to take action. By informing others about the dangers and providing possible solutions we are fighting the threat of antibiotic resistance.

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Works Cited

1) Wise R, Hart T, Cars O. 1998. Antimicrobial resistance. British Medicial Journal (**Edition**) [Internet]. [**Last Updated**, cited 2014 Feb 3] 317(7159): 609–610. Available from: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1113826/


2) Walsh B. 2014. New Report Says FDA Allowed "High Risk" Antibiotics to be Used on Farm Animals. Time (**Edition**) [Internet]. [2014 Jan 28, cited 2014 Feb 4] **Journal Info**. Available from: http://science.time.com/2014/01/28/new-report-claims-fda-allowed-high- risk-antibiotics-to-be-used-on-farm-animals/


3) **Author(s)** . 2013. Regulate antibiotics not recreational drugs, ethicist argues. CBC News (**Edition**) [Internet]. [2013 Feb 21, cited 2014] **Journal Info**. Available from: http://www.cbc.ca/news/health/regulate-antibiotics- not-recreational-drugs-ethicist-argues-1.1375414

Lab Animal Testing

The total amount of domestic animals used in animal research, such as cats and dogs (primates included), account for a mere 0.2% of all animals. (1) However, today every animal loving being seems to fear that animal researchers will eventually come to experiment on their precious Wow Wow Wubbzy. When the stigmas of animal research were developed, animal researchers were called to compensate by bettering the lives of the animals in question. The coddling of researcher’s test subjects is a purposeless effort that has diminishing effects on reliability in experiments and drains time, energy, and money from additional research.

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While I do acknowledge my opponent’s concerns on this subject that the experiments done may be gruesome, I would also like to show that the position fails in a world already ruled by the agricultural use of animals. For example the “UK will consume more chickens this year than the total number of all animals used in medical research over the past two centuries in Britain” which draws an accurate parallel between laboratory animals and animals raised for slaughter. (1) Laboratory animals are bred, and raised specifically for experimentation. Lab animals have no other purpose than to be used for further research just as animals raised for slaughter have no other purpose than to be food for the public. It is purposeless to waste one’s concerns on animals used in laboratories, especially when the actual number of animals used this century is less than the amount of chickens that will be mauled in the meat grinder this year. (1) Concerning oneself with the wellbeing of animals in research is not only purposeless but diminishes the animals’ usefulness in the research field.

Animal research is a valuable resource that medical researchers should be encouraged to take part in. Animal research can broaden one’s understanding of a disease and allows for researchers to share their research with others. Opponents of my position deem that animals are unreliable “models for the human body,” which is simply not true. (2) Animal models in research are what we can attribute neuroscientists’ and bio-psychologists’ greater understanding of the human brain. This remains as fact and is discussed in almost any textbook that concerns animal research (likely for this very controversy). Lab Animals are not valuable to researchers because of their results but because of the lack of a better method. It is just plain fact that living systems are much too complex for modern science to build a model. (3) Observing how new compounds react with an actual living organism is one of the best ways to conceive data. (3) Mind you, researchers don’t necessarily watch the organism, they do use equipments that aid data collection. (3) In actuality, this enforces the argument why we can not drop animal research. An organic system, with loops and returns in an individual cell to an entire organism, is the only system we are able to study because it works. No other model exists yet. However, in the Nature Article Failure to Care, the author supports a dual defense that Animal research is not only important but must be taken under strict regulations. (4) While I wholeheartedly understand this claim, in the scientific world it may be idealistic to pamper every lab animal to the standards of those against animal research.

Sucomming to the comfort of the experimental animals influences other variables to be present in an experimental setting that will be difficult to replicate. Replication of experiments in science graces the work with reliability, which is very important for research. If the experiment was performed by another researcher and it held the same results, then the experiment is reliable. Since it is up to the researcher to tend to the needs of the animals in question, each one may provide comfort in their own way, such as the use of anesthesia or a comfortable living environment. Of these two,the living environment would possess the most differences from lab to lab which can aid in random error. Additionally, how should we prove that conditions brought to the lab setting meant to comfort the lab animals would interfere with the experiment. Bluntly speaking, a use of an anesthetic in some experiments void responses that would otherwise be present. Expecting researchers to cater to the wellbeing of their lab animals all the same way to get the most out of reliability, is not only unlikely but potentially costly.

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Animal mistreatment claims stretch far and wide from the party concerned for the animals. For example, one complaint was that “the air conditioner’s noise is adversely affecting the welfare of the laboratory rodents”. (5) I understand that animals are living creatures that us, as humans, enjoy domesticating, playing with, and sometimes eating. However, when the wellbeing of laboratory animals is called into question over the ambiance noise of an air conditioning unit in a lab, I am inclined to question how many claims against animal research cover important matters. For instance, animal research is taken with care, and organisations are constantly checking for malpractice. Even if the lab were guilty of having a deafening air conditioning system, where would the lab be expected to get the money to have it replaced with a silent unit. How much would it cost for each research institution to have a new air conditioning installed only to replace the subtle ambiance of the machine. I can tell you that it would cost precisely more money than the additional research that could be done instead. Not to be vague, but it is simply the truth; unless the problem concerns the researchers ability to repeat the standardized experiment again with accuracy, then we shouldn’t spend money in places that wouldn’t better benefit the funds.

I would not be surprised if I receive backlash from this post, actually I would be more surprised not to. But I cannot stand back and claim that laboratory animals are entitled to certain luxuries that majority of the human population don’t have, like silent air conditioners. I agree that the animals should be respected and they should not be experimented on with ill cause, but in standard animal research reliability is everything. Furthermore, the public should be aware that funding for this kind research is not limitless and if researchers had the resources to expend in such a manner, I’m sure they would have. However, this is not the case in all occasions and why when the wellbeing of animals comes into question we must justify what actually qualifies as dangerous and unnecessary to the animals.

Bibliography

1. Forty Reasons Why We Need Animals in Research [Internet]. :Copyright 2014 Understanding Animal Research; [2013 Dec 16, cited 2014 Feb 2] . Available from: http://www.understandinganimalresearch.org.uk/about-us/the-science-action-network/forty-reasons-why-we-need-animals-in-research/

2. Animal Testing Is Bad Science: Point/Counterpoint [Internet]. Norfolk(VA):COPYRIGHT PETA; [cited 2014 Feb 2] . Available from: http://www.peta.org/issues/animals-used-for-experimentation/animal-testing-bad-science/

3. Lowe . 2009 Aug 13. Animal Testing: A View From the Labs [Internet]. :Copyright 2006 Corante; [2009 Aug 13, cited 2014 Mar 15] . Available from: http://pipeline.corante.com/archives/2009/08/13/animal_testing_a_view_from_the_labs.php

4. Failure of Care [Internet]. 2013 Dec 10. : COPYRIGHT 2014 Nature Publishing Group; [2013 Dec 12, cited 2014 Jan 28] . Available from: http://www.nature.com/news/failure-of-care-1.14332

5. Margaret McTighe , Elaine N. Videan . 2009 Sept. IACUC's responsibility [Internet]. : COPYRIGHT 2009 Nature Publishing Group; [cited 2014 Feb 2] . Available from: http://go.galegroup.com/ps/i.do?id=GALE%7CA207114133&v=2.1&u=unc_main&it=r&p=AONE&sw=w&asid=366408fd91040bf3eb475f3974a8d691