Difference between revisions of "Team:UCSC/Human Practices"

Worldwide Connections - A UCSC Tradition

The iGEM competition challenges teams to improve quality of life. To help the world requires an understanding of what the world is asking for; as the 6^th UCSC iGEM team, we uphold the reputation of UCSC investing heavily in worldwide outreach to not only spread the word about our project, but to understand the impact of our project on a personal level. Through personal connections we made, we evaluated potential issues related to our project including stigma, price, ethics, safety, security, and sustainability.

Inspiration

Before choosing a project topic, our team emailed over 50 World Health Organization representatives around the globe to determine the most pressing issues. With the women’s rights movement on the rise again, the 2018 UCSC iGEM team wanted to prompt the discussion of women’s health at this year’s competition. We determined that many less-developed countries struggle with access to contraception because of stigma, location, and cost. Our goal was to focus on those countries to determine if they’d be interested in our new contraception method and willing to speak with us about their personal experiences.

Execution

Our outreach team contacted several big organizations, associations, and foundations for help on finding locals willing to speak to us. Not many of them got back to us, so we instead went an alternative route. We searched GoFundMe and found a group of women in Uganda called the Joy Women’s Group asking for money to help buy condoms for their community. They were funded through the Brighter Brains Institute (BBI) and we quickly contacted the BBI who put us into contact with three local women’s groups in Uganda. Through word of mouth, we reached 7 additional women’s groups. We created a questionnaire for locals to fill out to have a consistent question format. Their response to our efforts prompted us to reach out to other groups in 15 more countries to further spread our word and evaluate the need for cheaper, more accessible birth control. We also spoke to family members and friends who have lived or traveled abroad to gain further perspective outside of women's groups that may know more about women's issues than the average citizen.

Outcome

Through our questionnaire and close conversations with people from several countries, we gained an accurate understanding of how challenging it is to not only access birth control, but maintain access to it. We received over 56 responses to our questionnaire as well as personal testimonies from people regarding their perspective on birth control in their communities. In the stories below, names have been exchanged with popular names from individuals’ respective countries for privacy reasons. Check out our map below to learn more!

Australia

Jenna, Pediatric Doctor

Awaiting completion of questionnaire.

We are currently working on updating information. We will update as it becomes available.

Brazil

Gisele, Mother and Community Leader

We are currently working on updating information. We will update as it becomes available.

China

Zhi, Former Chinese Citizen

We are currently working on updating information. We will update as it becomes available.

Colombia

Yeraldin, Colombian Citizen

Through a personal connection with a team member, we met Yeraldin, a Colombian-born citizen. She believes that our birth control method research is a meaningful pursuit. According to Yeraldin, “there are many unwanted pregnancies in Colombia, but it is a problem because there is no money to buy [contraceptives]”. Yeraldin believes that an easy, affordable birth control option could minimize the large amount of unplanned pregnancies currently in Colombia. She does not know of any specific rumors on birth control in Colombia because birth control is rarely discussed.

Maria, Universidad de los Andes

A few members of our iGEM team attended the 2018 BMES Coulter Conference. At the conference, our team members met a student named Maria from a Colombian university known as the Universidad de los Andes. We asked if she’d be interested in assisting us with our birth control project, and she said she would help us gain insight about birth control access in Colombia. Read More >> According to Maria, there are three primary healthcare plans in Colombia: “the public service, in which every working adult must pay an amount of their income for health coverage, the private service in which, additional to the amount they are already paying, the person must pay extra for a wider coverage of specialists and medicine, and the SISBEN which is the health plan for people in low income areas that do not have a job or cannot contribute to the healthcare system economically”. There are other healthcare plans such as the compulsory health plan (Plan Obligatorio de Salud) which covers a variety of birth control methods. Maria is actually on this healthcare plan but didn’t realize that it covered birth control methods until she researched for this project. She also believes that not many people would know this either unless they researched like she did. According to Maria, birth control is generally supported in the more developed areas of Colombia, but in rural areas there is still stigma surrounding birth control methods. As a result, many women in the rural areas get pregnant in their early teens. Maria has experience taking birth control herself; she used birth control pills and states that “it is the most popular method around the community”. A recent report given to us by Maria relays that birth control pills in Colombia were reduced in price by 50% so that more people can buy them. We are happy to see that Colombia is taking action to make birth control more accessible, but the issue of stigma still exists. We hope that our brochure may be of use to the rural communities in Colombia.

Guatemala

Lizza, Citizen

We are currently working on updating information. We will update as it becomes available.

India

Foundation for Mother and Child Health

Through a connection with our PI, David Bernick, we met Piyasree Mukherjee, CEO of the Foundation for Mother and Child Health in India. According Ms. Mukherjee, her community possesses differing views on birth control. Some deem birth control a “money trap” because it requires device replacement or multiple rounds of a prescription. Others are skeptical and/or not knowledgeable about birth control because of the lack of information. Our team knows that birth control is expensive, but this was the first time that we heard that women felt gouged by necessary recurrent purchases of birth control methods. We will continue to update this information when their questionnaire responses arrive.

Italy

Aurora, Frequent Traveler & Student

Our team spoke with a Aurora, a friend of the team and a frequent traveler between Italy and the US. During her travels to Italy, Aurora found it difficult to use her preferred form of birth control and was instead pushed to use an IUD. IUDs, although common, are accompanied by potential painful side-effects; Aurora described her first IUD experience as “super painful”. IUDs typically last 3-6 years, and when Aurora eventually needed to get her IUD replaced, doctors informed her that her cervix was too small for the second IUD, so she received medicine to soften her cervix. She withstood torturous cramps during the process and relayed to us, “if it hurt that [much] putting it in, I’m worried about getting it out”. We asked Aurora about religious implications of birth control in Italy, and she described that since Italy is a heavily Catholic country, in most cases, religious leaders discourage use of birth control methods because they view it as sin. Regardless of the fact that Italy has easier access to contraceptives compared to most other countries we’ve heard from, the country’s religious overtones halt many from pursuing birth control for fear of harassment and ostracism.

Mexico

Rosa, Citizen & Research Team Lead

From Guanajuato, Mexico, we were able to receive questionnaires from and interview a few women of a scientific research team. The team’s PI, Rosa , described her past experiences with birth control to us. She described her younger self as “uneducated” on the proper use of birth control. As a result of her ignorance and continued lack of birth control, she became pregnant at a young age and had a child she wasn’t able to proper care for. The team supports our new birth control method.

New Zealand

Ava, New Zealand Citizen

Ava, an alum from the University of Otago, shared that she often struggles to obtain birth control. In New Zealand, 15-minute appointments with a local health care provider are available to all citizens but are too short to be personalized enough to the patient, and while longer appointments are available, they are more expensive. This lack of personalization and Ava’s lack of funds deterred her from pursuing birth control forms that require a prescription, so she instead pursued condom use. One-use condoms, however, became expensive after a while, and Ava decided to spend her money on things she saw more important than her sexual health. Although many of her peers used oral contraceptives, her low-income background forced her to prioritize buying food and paying rent over sexual protection. Sexual health education is not emphasized in the rural areas around Ava and locals still use traditional forms of birth control, many of which are painful, unsafe, and/or ineffective. For example, in areas where poroporo leaves are found, people make a broth from these leaves that they believe acts as a contraceptive but is actually poisonous. These misconceptions and dangerous alternatives prove to our team how much our cheap and safe contraceptive is needed.

Peru

Guillermo, Former Peru Citizen

Guillermo is a close family friend of one of our iGEM members. He moved to the U.S. in the late 70’s but visits his family in Peru at least once a year. Guillermo has witnessed both Peru’s innovations and follies over the decades as he’s travelled between countries. In the 70’s and 80’s, birth control was very expensive, and only people of higher economic status had access to it. Now, since Peru is a predominantly Catholic society, many Peruvians don’t support the use of birth control in general. In most cases, those in need of birth control are the ones who can’t afford it. In addition to cost, access to birth control is also an issue. According to Guillermo, Peruvians “have social services available to help, but no outreach programs since many women live in the mountains of Peru away from the capital”. Peru is also a male-dominated society, and many husbands/boyfriends “don’t believe in birth control and are against it out of ignorance”. It’s no surprise then that Peru has an extremely high rate of illegal abortions. Guillermo explained that “women die all the time” from illegal abortions. Interestingly enough, he wonders if the design of our product would entice women to try it. The most common form of birth control in Peru is birth control pills, which are easy to identify given their recognizable packaging. Our product would grow as a yeast, and the user could press the dried yeast herself to form a pill. This process is less recognizable than normal birth control pills and may be appealing for women who face a male-dominated society that doesn’t approve of birth control use. This viewpoint hadn’t been considered by our team before, and we now hope to incorporate this angle into our development and advertisement of our new birth control method.

Russia

Misha, Former Russian Citizen

Our team spoke with Misha, a woman who spent the first part of her life in Soviet Russia. She tried for many years to obtain any form of birth control but only received her first IUD after having her first child at age 19. She couldn’t afford to purchase condoms and most couples opted to not use any forms of contraception anyway. Russia’s government did not encourage or supply cheap contraceptives but readily offered inexpensive abortions at state hospitals. Most women were aware of this and expected to have one to three abortions in their lifetimes. These clinics didn’t last long, as Misha described many of them closing after only a few years of operation; this forced many Russian women to obtain illegal abortions, most of which were ineffective and deadly to the mothers.

Uganda

Basaliza Women Development Association (BAWODA)

BAWODA is group of women leaders spread all throughout Uganda. Our outreach team spoke with Joy Muhindo, the chairperson of BAWODA. She informed us that the stigma on birth control in Uganda arose because women began trying unsanctioned birth control methods that had very dangerous side effects. Many women heard of these side effects and assumed that all birth control methods were this dangerous. The group encourages condom use if women cannot access safer birth control methods. While the BAWODA women are willing to try our new method, they hope that we also encourage condom use on top of our contraception because of the prevalence of HIV/AIDS in poorer countries. We hadn’t considered that condom use is still necessary on top of our birth control since ours cannot protect against AIDS, so this was an important reminder for us to consider.

Buhanga Thuligahuma Women's Group

❮ ❯

Through the recommendation of Hank Pellissier of the Brighter Brains Institute, our team contacted a Buhangan villager named Masereka Sebastian. Buhanga is a rural village of 2,000 people, and all are members of the BaKonzo tribe whose village is extremely isolated. According to Masereka Sebastian, you can't drive a car there - you have to walk 3 kilometers or take a dirt bike there. Since Masereka Sebastian owns a dirt bike and can access printing shops outside of the village, our iGEM team contacted him to print our questionnaires for distribution to the local Buhanga Women. The women chosen to participate in our research were decided by Sebastian. Some women chose not to have their answers published. From their questionnaire responses, we learned how expensive contraception methods are and how many women’s husbands don’t respond positively to them using birth control. As with other questionnaire responses, more of the same rumors were brought up; specifically, that birth control can cause cancer or infertility. We were also reminded that Uganda is a heavily Catholic country, which means that contraception use is discouraged, so this is another aspect we need to consider in the development and distribution of our project.

Joy Women's Group

❮ ❯

The Joy Women’s Group is located in Western Uganda in the Nyamwamba Division of the Kasese Municipality. One of their group’s objectives is to promote nutrition, health, and hygienic practices in the community. By far, the Joy Women’s Group is our most responsive group. All 25 of their group members were highly interested in participating in our survey. According to the participants, their community supports the use of contraceptives. Their community actually has access to contraception through a government healthcare facility known as Naigobya HC III. Naigobya HC III provides family planning services, maternal care, prenatal care, and post-natal care. Through this facility, locals may receive injections or pills as birth control. Similar to other Ugandan groups, however, treatment at this facility is expensive. The Joy Women’s Group also presented rumors similar to what we heard from other groups. Their information is invaluable, and our team is very thankful for their participation.

Kabwe Rural Women Development Association (KARWODA)

Through the recommendation of Kabugho Beatrace from KUWA, we met Masika Annet of the Kabwe Rural Women Development Association (KARWODA). Beatrace informed Annet that we were looking for more information about birth control methods and/or family planning programs already in practice, and she told us that “most birth control methods are sold in hospitals, drug shops, and clinics but are inaccessible”. She emphasized that even though options are available, most are far too expensive for the average woman to afford. Many women also fear dangerous side-effects such as blocked oviducts and bleeding. Women, instead, revert to condom use which is often accompanied by public shaming if they are seen carrying condoms out of a shop. Shame plays a large part, it seems, in deterring these women from using birth control. As a result, women partake in unprotected sex which results in unwanted pregnancies and STDs.

Kinywankoko United Women Association (KUWA)

Our iGEM team made contact with Kabugho Beatrace through Hank Pellissier of the Brighter Brains Institute. KUWA is a women’s group based in the Kasese Municipality of Uganda. They assist marginalized women in the surrounding villages by providing them condoms, sanitary products, feminine hygiene education, and economic empowerment. They reside in the Bukonzo county which is “rated among the poorest counties where women live below poverty line and one [Ugandan citizen] survives on less than one US dollar a day” (Kabugho Beatrace, chairperson of KUWA). According to Beatrace, the population of Kasese increases every day due to high birth rates. At the same time, there is also a high infant mortality rate, as mothers are in too poor of health to carry a child. The only contraception available in Bukonzo county are condoms sold in remote pharmacies. According to Beatrace, the condoms are placed near registers and customers are often too afraid to be seen purchasing condoms due to the overwhelming stigma on birth control in Uganda. When we spoke with Beatrace, she was very supportive of our new method of contraception. She works closely with other women’s groups in Uganda and contacted them excitedly to discuss our new method and provide us their input on our project’s safety, maintainability, and cost. Our team is extremely grateful for Kabugho Beatrace and the connections she provided us.

Kyogha Women

The Kyogha Women were particularly interesting to speak with. Their chairperson, Esther, informed us that her group has been on the search for advanced, safe birth control methods for a while now. Her group recently visited Makerere University in Uganda to see if they can “make an advanced birth control method that is also accessible with less side effects”. Esther was ecstatic to hear of our approach. She’s spent many years implementing family planning programs and trying to address the stigma on birth control. As with other groups, she mentioned that people fear purchasing birth control because they don’t “want to be laughed at”. We hope that our new birth control method will end Esther’s search for an affordable and safe contraceptive.

Nyakiyumbu Widows Association

When our team reached out to the Nyakiyumbu Widow’s Association, they were quick to reply and were very interested in our contraception method. Muhindo Nyesi, chairperson of the NWA, stopped replying to our emails soon after. Our team wondered if her group lost interest, but we soon learned the reason for her absence; Nyesi’s nephew was hit by a car and, during recovery, was also brutally attacked by a group of boys. He was in the ICU for several weeks and underwent brain surgery, but he finally recovered enough for Nyesi to make a trip to the local library to email us back. She provided us responses to our questionnaire and apologized for her absence. We are so grateful for Nyesi’s dedication to our project, especially in these difficult times for her family.

Promote Africa Foundation

We discovered the Promote Africa Foundation (PAF) through the Joy Women’s Group. The PAF is a united women’s group that runs programs related to female reproductive health and women’s rights. According to Evelyn Lewsley, the leader of the PAF, they “encourage women to space their children because most children are abandoned by families who fail to provide for their children”. The PAF encourages birth control methods throughout the Kasese District, and they’re currently encouraging birth control injections but struggle to get women to participate since injections sometimes cause bleeding. The PAF is excited to work with us as they hope our birth control method will be safer for the women in Africa.

Rita Women Development Association

The Rita Women Development Association resides in the Rwenzori region of Western Uganda. This group empowers women in their community and promotes contraceptives as a means to prevent the spread of sexually-transmitted diseases. Through the recommendation of Kabugho Beatrace of KUWA, we made contact with the Rita women. Masika Vicky, the chairperson of Rita, informed us that there is a lot of stigma on contraception use (primarily condoms because they are the only contraception available). Currently, their group is working on an anti HIV/AIDS campaign because there is a high percentage of people affected by the virus in the Rwenzori region. The spread of HIV/AIDS stems from the stigma on contraception use; according to Masika Vicky, an estimated 98% of people fear to buy condoms in public and therefore have unprotected sex despite the outbreak of HIV/AIDS. Read More >> This stigma also correlates with the high birth rates, similar to those seen in the Kasese Municipality where KUWA resides. Masika Vicky relayed that “Uganda is now highly populated, so we are encouraging family planning.” We spoke to five Rita women about their opinions on our progesterone-producing yeast and they all were excited for a contraception method containing natural progesterone (as opposed to progestin, the synthetic form of progesterone). One Rita member informed us that they’ve initiated “related programmes to teach women about reproductive health and child spacing”. We are grateful to work with a group with similar goals to ours, and we appreciate the insight their questionnaire responses provided us.

United Kingdom

Dr. Pam Lowe, Aston University

Our team spoke to Dr. Pam Lowe from Aston University in the United Kingdom. Dr. Lowe is the Senior Lecturer for the Department of Sociology and Policy at Aston University. Dr. Lowe is well known for her strong opinions on the unspoken ‘two-child policy’ in the United Kingdom. According to Dr. Lowe, the only stigma on birth control is not on those who use it, but rather it’s on those who DON’T. Fortunately for the UK, birth control is free with the National Health Service, even for teenagers. Many teenagers take advantage of this system since the NHS does not notify parents for use of services. Even migrants make use of sexual health clinics in the UK since the NHS does not require a valid ID. In Dr. Lowe’s opinion, the UK most likely isn’t in need for a new birth control method; she does suggest, however, that we contact the NHS to inquire about their use of our method if it is as cost-effective as the ones they currently encourage. Dr. Lowe’s information was extremely valuable, as it shows the duality of situation for poorer countries like Uganda versus those in heavily-developed countries like the UK.

United States of America

Family Planning 2020

Family Planning 2020 (FP2020) is a well-known global partnership that supports women’s rights related to sexual and reproductive health. They are a subsection of the United Nations Foundation and are famous for partnering with the Bill and Melinda Gates Foundation to spread birth control information and awareness. By 2020, they want to expand access to family planning “information, services, and supplies to women in 69 of the world’s poorest countries”. Read More >>FP2020 has contacts all around the world working to increase access to birth control, and our team felt they would be a perfect partner to help us expand our outreach. We sent a request for a meeting and after a few weeks, Madeleine Dimarco reached out to schedule us an interview with Martyn Smith, Managing Director of FP2020. Martyn’s primary role in FP2020 is to work closely with countries to establish contacts in “civil society, government, donor agencies, and private sectors”. Martyn described relations with numerous groups around the globe, including local agents familiar with the regulatory environment of medications. Martyn offered to connect us with those local agents to better understand what steps are needed to actually get out product to market in our countries of interest. Most medications require rigorous testing, but the requirements vary country to country. We hope that this relationship will allow us to plan for future testing as well as gauge interest in our method coming to market.

The PoPPY team would like to thank everyone who made this project possible, especially those described above. Thank you to every individual who participated in our human practices research by answering our questionnaire as well as those who allowed our team members to interview them on such personal matters. Without you, this project wouldn't be what it is today. Thank you!