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Sociological Impacts and Ethical implications of Personalized Medicine
#1
Personalized health-care is becoming more and more apparent as the future of medicine. The benefits are apparent, and the scientific and health-related impacts have been discussed many times over. However, there is an aspect of personalized medicine poorly discussed in the media, and in a sense left to “We’ll just see what happens” attitudes; the sociological, and underlying ethical, questions and complications raised by personalized medicine.

The integration of personalized medicine into the health-care system is inevitably going to change the patient-doctor relationship, the doctor’s education and approach, and most of all, the patients themselves.
With the emergence of personal genetic sequencing, a person is now able to, for a stunningly low price reaching as low as 9000$ in some companies this year, get their full genome sequenced. The price continues dropping at an increasing rate, as commercial genetic sequencing appears to follow a kind of Moore’s law, even surpassing it. A multitude of companies now offer a detailed analysis of the genomic data, providing an individual with a complete profile of genetic risks, markers and inheritable diseases and states, along with specific receptor types. This means that a genomic profile can not only tell you which disease you inherited, if any, but also which diseases and states you have a statistically significant risk for, what risk factors and susceptibility you have to which disease, the individual specifications of your immune system, and even your susceptibility to being overweight or obese.

First off, personalized medicine requires a great deal of medical literacy on part of the patient. With the increasing availability of home tests, lasting analyses and private laboratories (some of them operating with a mail-a-sample system) giving the patients personalized risk assessments and status analysis, half of the responsibility for a correct diagnosis and right treatment will fall to the patients themselves. Individual characteristics, such as age, weight, body type, race, gender, and ultimately the genetic profile, individual immune systems, reactions to certain types of treatment and medication, effectiveness of diverse substances and risk factors will all contribute greatly, if not completely determine, the course of treatment and diagnosis. The patients are expected to contribute a multitude of information, and consider the implications of each available option before making an informed decision in concert with the doctor. This can not incur with the present state, as it is. Most patients feel some symptoms, and immediately go to the doctor, expecting them to immediately determine exactly what it is and fix it. Some do the effort to goggle their symptoms and usually culminating in a worse state then before, considering the confusing multitude of information (often completely inaccurate or wrongly interpreted) on the public forums and supposed health magazines available on the net. Most of the patients have very little medical literacy or none at all, and leave everything up to the doctor. To change that, an enable the new, innovative and beneficial aspects of scientific progress concerning personalized medicine to have any effect, much will have to be invested in increasing the medical literacy and general knowledge of the population. Educational programs, coupled with a media coverage and year, perhaps decade long projects will have to be put in place before such an innovation can be successfully implemented into the medical system.

Secondly, doctors have to be re-educated to be able to grasp, understand and implement the variety of new technologies and ideas into their practice. Much attention will have to be given to patient-doctor relations and the “people approach” aspect of medical practice. The institution of medicine will have to be drastically altered, with doctors having a more limited amount of patients, and given much more attention to details of each, then before. Doctors will have to consider the individual information about every aspect of the patient’s body, not only those related to the current disease. Therapies will have to be chosen and implemented in accordance to the medical preferences of each patient individually, and the doctor will have to help the patient integrate that therapy into their daily lives.

Finally, the ethical decisions facing both the patients and the doctor will require a general consensus by the medical community. With the ability to predict the individual risks to certain diseases and susceptibility to different states doctors will have an ethical obligation to consider and advise patients on making certain, sometimes even drastic, changes considering lifestyle and choices, which will require a lot of deliberation on the doctors part. The ability to know the individual responsiveness to therapies and medicine will enable the doctor to predict the course of treatment and effectiveness thereof, but what if a person shows to be at risk to severe side-effects to a certain therapy, and other methods prove to be ineffective? Will the doctor recommend the therapy, although it has a small chance of success and a greater chance of causing undesired side-effects, if it is the only available course of action? Will that be left to the patient to decide, or will there be a legal consensus as to what degree of risk is acceptable? How will the doctors respond to questions raised by the patients considering their options for treatment in cases treatment shows chance of being ineffective or causing severe discomfort? Another, wholly different question arises; diagnostic tools, being pivotal in personalized medicine, will require biological samples, a great deal of them, from every person. These samples will be analysed by third party companies and the results provided to the patient or doctor, or perhaps insurance companies. Who will retain those results and samples, and who will have access to them? Will it be possible to identify an individual by their results? How will insurance companies react to being able to predict with great certainty the future health of an individual? Will it become mandatory to have your whole genome sequenced and provide the data to the insurance companies or even make the data public? How will the privacy of patients be insured, considering the availability of their personal genetic data to several parties before it even reaches them?

This is only a fraction of questions with no or uncertain answers, which will require a great deal of dialogue between science, industry, law and government. Each of those questions will have to be thoroughly thought over and all its implications analyzed before a standard can be set, and integration of individualized medicine can begin in existing health-care systems.

Resources:
Kickbusch I and Maag D Health Literacy. In: Kris Heggenhougen and Stella Quah, editors International Encyclopedia of Public Health, Vol 3. San Diego: Academic Press; 2008. pp. 204-211. Academic Press; 2008. pp. 204-211.
Mardis E. A decade's perspective on DNA sequencing technology. Nature, 470: 198-203. 2011.
Human genome at ten: the sequence explosion. Nature, 464: 670-671. 2010.
Wetterstrand KA. DNA Sequencing Costs: Data from the NHGRI Genome Sequencing Program (GSP)
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#2
Impact of personalized medicine is positive. They offer quick relief and great preventive measures
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