Difference between revisions of "Team:KU Leuven/HP/Silver"

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            <h1>Human practices - Silver</h1>
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<h1>Human Practices - Silver</h1>
            <p></p>
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<p>In earlier discussions with specialists, we gained first insights on how our project would influence the treatment of patients. But what do they themselves think of our idea?
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In order to investigate this, we proposed to invite several patients to discuss our project. However, talking to patients is not something you go over lightly.
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After receiving approval from the ethics committee of the UZ Leuven, we planned the overall course of the interviews in detail. The proposed questions were then reviewed by professor Monbaliu, who has already helped us earlier in the project.
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By performing patient interviews, we have gained insights in the daily lives of patients and learned of their opinion about HEKcite and the device, which would enable them to check the level of immune suppressants continuously. This information helped us frame the impact of our project, allowed us to adapt the project to patients’ needs and may be interesting for stakeholders in the future. In earlier discussions with specialists, we gained first insights on how our project would influence the treatment of patients. But what do they themselves think of our idea?
            <h3>★  ALERT! </h3>
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In order to investigate this, we proposed to invite several patients to discuss our project. However, talking to patients is not something you go over lightly.
            <p>This page is used by the judges to evaluate your team for the <a href="https://2017.igem.org/Judging/Medals">medal criterion</a> or <a href="https://2017.igem.org/Judging/Awards"> award listed above</a>. </p>
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            <p> Delete this box in order to be evaluated for this medal criterion and/or award. See more information at <a href="https://2017.igem.org/Judging/Pages_for_Awards"> Instructions for Pages for awards</a>.</p>
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After receiving approval from the ethics committee of the UZ Leuven, we planned the overall course of the interviews in detail. The proposed questions were then reviewed by professor Monbaliu, who has already helped us earlier in the project.
        </div>
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By performing patient interviews, we have gained insights in the daily lives of patients and learned of their opinion about HEKcite and the device, which would enable them to check the level of immune suppressants continuously. This information helped us frame the impact of our project, allowed us to adapt the project to patients’ needs and may be interesting for stakeholders in the future.
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            <h1>Silver Medal Human Practices</h1>
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            <p>iGEM teams are leading in the area of Human Practices because they conduct their projects within a social/environmental context, to better understand issues that might influence the design and use of their technologies.</p>
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            <p>Teams work with students and advisors from the humanities and social sciences to explore topics concerning ethical, legal, social, economic, safety or security issues related to their work. Consideration of these Human Practices is crucial for building safe and sustainable projects that serve the public interest. </p>
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            <p>For more information, please see the <a href="https://2017.igem.org/Competition/Human_Practices">Human Practices page</a>.</p>
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<h3><b><i>Question 1:</h3><p>What is your experience using immune suppressants?</p><br></b></i>
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<p>All participants have the same answer: There is more to organ transplantation than meets the eye. After the surgery, not all problems are solved as you would expect, but new ones arise. Some of these issues are side effects, caused by immune suppressants. Among the most frequent side effects are insomnia, easy bruising and bleeding, a tingling sensation on the skin, infection of the joints, et cetera…</p>
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            <h3>Silver Medal Criterion #3</h3>
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            <p>Convince the judges you have thought carefully and creatively about whether your work is safe, responsible and good for the world. You could accomplish this through engaging with your local, national and/or international communities or other approaches. Please note that standard surveys will not fulfill this criteria.</p>
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<h3><b><i>Question 2:</h3></b></i><p>Would you like to see a decrease of the amount of blood samples that needs to be drawn?</p>
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<p>Most participants answered that they experience only mild discomfort from drawing blood. This is explained by the fact that blood drawings serve many purposes: When the participants go to medical consultations for blood drawings, the concentration of immune suppressants is just one of many variables analysed. This means that our device would most likely not reduce the total number of hospital sessions and the discomfort of blood drawing. This raises the question whether the device would be helpful for transplant patients. Luckily, this question was answered in the continuation of the interview.  </P>
            <h5>Some Human Practices topic areas </h5>
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                <li>Philosophy</li>
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<h3><i><b>Question 3:</h3></b></i><p>In which way do you think this device could influence your quality of life?</p>
                <li>Public Engagement / Dialogue</li>
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                <li>Education</li>
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<p>Despite the fact that all patients agreed that our project could increase their quality of life, the opinions on how it would affect their lives differed among the patients. Some of them think it would influence their life in a positive way as it could offer them piece of mind. Risk of rejection by the body increases as more time passes, and by then, most patients only visit the doctor once every three months. Therefore, they think the possibility of checking the level of immune suppression on a daily basis would give them comfort and reduce their stress levels, and it would also enable the doctors to react quickly to changes that would otherwise remain undetected for three months. Others shared the opinion that, while our project would not influence their lives directly, they think that our device could be a general advance in the organ transplantation field. When the risk of rejection of an organ could be lowered, this would ease their mind indirectly. Hearing from patients that this device could have an impact on their lives motivated us even further to complete our project successfully. </P>
                <li>Product Design</li>
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                <li>Scale-Up and Deployment Issues</li>
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                <li>Environmental Impact</li>
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<h3>Question 4:</h3><p>Would you be willing to undergo this procedure if this could lower your risk of rejection? What is your opinion about the device containing genetically modified cells?</p>
                <li>Ethics</li>
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                <li>Safety</li>
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<p>All responses of the patients were positive. They were indeed willing to undergo the procedure if this could lower the risk of rejection of the transplanted organ. A crucial consideration is that the device would be placed during the transplantation process. Most patients were tired of the various medical interventions, and would like to avoid undergoing surgeries that were not strictly necessary, as they inflict a lot of pain and are a cause of frustrations. </p>
                <li>Security</li>
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<p>When asked about the genetically manipulated cells in the device, all patients reacted positively. As long as they are given sufficient information and are made aware of all the consequences and risks that result from the genetic manipulation, they would be willing to use the device. </p>
                <li>Public Policy</li>
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                <li>Law and Regulation</li>
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<h3><b><i>Question 5:</h3></i></b><p>Would you be willing to participate in a clinical study to assess this device during a case in which you do not know if this could lower the risk of rejection?</p>
                <li>Risk Assessment</li>
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            </ul>
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<p>The interviewed patients told us they would like to help scientific advances to improve the lives of future transplantation patients. Some of them mention that they have already participated in clinical studies in the past, and indicate that they are open to new developments. Therefore, two of the four patients would be willing to participate if a trusted transplantation doctor, such as professor Monbaliu, supported the study. The other two patients were more hesitant and they would only consider participating in case the risks were minimal and well known.</p>
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<h3><b><i>Question 6:</h3></i></b><p>According to professor Monbaliu, patient compliance is a problem in the organ transplantation field, especially some years after the surgery. The device could alert you when you have not taken your drugs yet by sending out notifications. Do you think this could be a helpful reminder for you when you forget to take your medicine or be helpful for taking your medicine at the same time on a daily basis?</p>
            <h5>What should we write about on this page?</h5>
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            <p>On this page, you should write about the Human Practices topics you considered in your project, and document any special activities you did (such as visiting experts, talking to lawmakers, or doing public engagement). This should include all of the work done for the Silver Medal Criterion #3. Details for your Gold medal work and/or work for the two Human Practices special prizes should be put on those specified pages.</p>
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<p>The patients we talked to have received their transplants 2 to 7 years ago. However, they all told us that they have never forgotten to take their drugs, and this is no issue for them. However, the immune suppressants have to be taken at specific time points. The patients admitted that, as more time passed after the organ transplantation, they tended to take their drugs at less specific time points. These inaccuracies occur especially on holidays or special occasions, as it is difficult to take a medicine at the exact same time every day. Therefore, the patients see our device as a useful system, as it could give out a notification on their computer or smartphone. </p>
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            <h5>Inspiration</h5>
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            <p>Read what other teams have done:</p>
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            <ul>
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                <li><a href="https://2014.igem.org/Team:Dundee/policypractice/experts">2014 Dundee </a></li>
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                <li><a href="https://2014.igem.org/Team:UC_Davis/Policy_Practices_Overview">2014 UC Davis </a></li>
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                <li><a href="https://2013.igem.org/Team:Manchester/HumanPractices">2013 Manchester </a></li>
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                <li><a href="https://2013.igem.org/Team:Cornell/outreach">2013 Cornell </a></li>
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            </ul>
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Revision as of 14:17, 18 August 2017

Human Practices - Silver

In earlier discussions with specialists, we gained first insights on how our project would influence the treatment of patients. But what do they themselves think of our idea? In order to investigate this, we proposed to invite several patients to discuss our project. However, talking to patients is not something you go over lightly.
After receiving approval from the ethics committee of the UZ Leuven, we planned the overall course of the interviews in detail. The proposed questions were then reviewed by professor Monbaliu, who has already helped us earlier in the project. By performing patient interviews, we have gained insights in the daily lives of patients and learned of their opinion about HEKcite and the device, which would enable them to check the level of immune suppressants continuously. This information helped us frame the impact of our project, allowed us to adapt the project to patients’ needs and may be interesting for stakeholders in the future. In earlier discussions with specialists, we gained first insights on how our project would influence the treatment of patients. But what do they themselves think of our idea? In order to investigate this, we proposed to invite several patients to discuss our project. However, talking to patients is not something you go over lightly. After receiving approval from the ethics committee of the UZ Leuven, we planned the overall course of the interviews in detail. The proposed questions were then reviewed by professor Monbaliu, who has already helped us earlier in the project. By performing patient interviews, we have gained insights in the daily lives of patients and learned of their opinion about HEKcite and the device, which would enable them to check the level of immune suppressants continuously. This information helped us frame the impact of our project, allowed us to adapt the project to patients’ needs and may be interesting for stakeholders in the future.

Question 1:

What is your experience using immune suppressants?



All participants have the same answer: There is more to organ transplantation than meets the eye. After the surgery, not all problems are solved as you would expect, but new ones arise. Some of these issues are side effects, caused by immune suppressants. Among the most frequent side effects are insomnia, easy bruising and bleeding, a tingling sensation on the skin, infection of the joints, et cetera…



Question 2:

Would you like to see a decrease of the amount of blood samples that needs to be drawn?


Most participants answered that they experience only mild discomfort from drawing blood. This is explained by the fact that blood drawings serve many purposes: When the participants go to medical consultations for blood drawings, the concentration of immune suppressants is just one of many variables analysed. This means that our device would most likely not reduce the total number of hospital sessions and the discomfort of blood drawing. This raises the question whether the device would be helpful for transplant patients. Luckily, this question was answered in the continuation of the interview.



Question 3:

In which way do you think this device could influence your quality of life?


Despite the fact that all patients agreed that our project could increase their quality of life, the opinions on how it would affect their lives differed among the patients. Some of them think it would influence their life in a positive way as it could offer them piece of mind. Risk of rejection by the body increases as more time passes, and by then, most patients only visit the doctor once every three months. Therefore, they think the possibility of checking the level of immune suppression on a daily basis would give them comfort and reduce their stress levels, and it would also enable the doctors to react quickly to changes that would otherwise remain undetected for three months. Others shared the opinion that, while our project would not influence their lives directly, they think that our device could be a general advance in the organ transplantation field. When the risk of rejection of an organ could be lowered, this would ease their mind indirectly. Hearing from patients that this device could have an impact on their lives motivated us even further to complete our project successfully.



Question 4:

Would you be willing to undergo this procedure if this could lower your risk of rejection? What is your opinion about the device containing genetically modified cells?


All responses of the patients were positive. They were indeed willing to undergo the procedure if this could lower the risk of rejection of the transplanted organ. A crucial consideration is that the device would be placed during the transplantation process. Most patients were tired of the various medical interventions, and would like to avoid undergoing surgeries that were not strictly necessary, as they inflict a lot of pain and are a cause of frustrations.

When asked about the genetically manipulated cells in the device, all patients reacted positively. As long as they are given sufficient information and are made aware of all the consequences and risks that result from the genetic manipulation, they would be willing to use the device.


Question 5:

Would you be willing to participate in a clinical study to assess this device during a case in which you do not know if this could lower the risk of rejection?


The interviewed patients told us they would like to help scientific advances to improve the lives of future transplantation patients. Some of them mention that they have already participated in clinical studies in the past, and indicate that they are open to new developments. Therefore, two of the four patients would be willing to participate if a trusted transplantation doctor, such as professor Monbaliu, supported the study. The other two patients were more hesitant and they would only consider participating in case the risks were minimal and well known.


Question 6:

According to professor Monbaliu, patient compliance is a problem in the organ transplantation field, especially some years after the surgery. The device could alert you when you have not taken your drugs yet by sending out notifications. Do you think this could be a helpful reminder for you when you forget to take your medicine or be helpful for taking your medicine at the same time on a daily basis?


The patients we talked to have received their transplants 2 to 7 years ago. However, they all told us that they have never forgotten to take their drugs, and this is no issue for them. However, the immune suppressants have to be taken at specific time points. The patients admitted that, as more time passed after the organ transplantation, they tended to take their drugs at less specific time points. These inaccuracies occur especially on holidays or special occasions, as it is difficult to take a medicine at the exact same time every day. Therefore, the patients see our device as a useful system, as it could give out a notification on their computer or smartphone.