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《HOPE English 希平方》服務條款關於個人資料收集與使用之規定

隱私權政策
上次更新日期:2014-12-30

希平方 為一英文學習平台,我們每天固定上傳優質且豐富的影片內容,讓您不但能以有趣的方式學習英文,還能增加內涵,豐富知識。我們非常注重您的隱私,以下說明為當您使用我們平台時,我們如何收集、使用、揭露、轉移及儲存你的資料。請您花一些時間熟讀我們的隱私權做法,我們歡迎您的任何疑問或意見,提供我們將產品、服務、內容、廣告做得更好。

本政策涵蓋的內容包括:希平方 如何處理蒐集或收到的個人資料。
本隱私權保護政策只適用於: 希平方 平台,不適用於非 希平方 平台所有或控制的公司,也不適用於非 希平方 僱用或管理之人。

個人資料的收集與使用
當您註冊 希平方 平台時,我們會詢問您姓名、電子郵件、出生日期、職位、行業及個人興趣等資料。在您註冊完 希平方 帳號並登入我們的服務後,我們就能辨認您的身分,讓您使用更完整的服務,或參加相關宣傳、優惠及贈獎活動。希平方 也可能從商業夥伴或其他公司處取得您的個人資料,並將這些資料與 希平方 所擁有的您的個人資料相結合。

我們所收集的個人資料, 將用於通知您有關 希平方 最新產品公告、軟體更新,以及即將發生的事件,也可用以協助改進我們的服務。

我們也可能使用個人資料為內部用途。例如:稽核、資料分析、研究等,以改進 希平方公司 產品、服務及客戶溝通。

瀏覽資料的收集與使用
希平方 自動接收並記錄您電腦和瀏覽器上的資料,包括 IP 位址、希平方 cookie 中的資料、軟體和硬體屬性以及您瀏覽的網頁紀錄。

隱私權政策修訂
我們會不定時修正與變更《隱私權政策》,不會在未經您明確同意的情況下,縮減本《隱私權政策》賦予您的權利。隱私權政策變更時一律會在本頁發佈;如果屬於重大變更,我們會提供更明顯的通知 (包括某些服務會以電子郵件通知隱私權政策的變更)。我們還會將本《隱私權政策》的舊版加以封存,方便您回顧。

服務條款
歡迎您加入看 ”希平方”
上次更新日期:2013-09-09

歡迎您加入看 ”希平方”
感謝您使用我們的產品和服務(以下簡稱「本服務」),本服務是由 希平方 所提供。
本服務條款訂立的目的,是為了保護會員以及所有使用者(以下稱會員)的權益,並構成會員與本服務提供者之間的契約,在使用者完成註冊手續前,應詳細閱讀本服務條款之全部條文,一旦您按下「註冊」按鈕,即表示您已知悉、並完全同意本服務條款的所有約定。如您是法律上之無行為能力人或限制行為能力人(如未滿二十歲之未成年人),則您在加入會員前,請將本服務條款交由您的法定代理人(如父母、輔助人或監護人)閱讀,並得到其同意,您才可註冊及使用 希平方 所提供之會員服務。當您開始使用 希平方 所提供之會員服務時,則表示您的法定代理人(如父母、輔助人或監護人)已經閱讀、了解並同意本服務條款。 我們可能會修改本條款或適用於本服務之任何額外條款,以(例如)反映法律之變更或本服務之變動。您應定期查閱本條款內容。這些條款如有修訂,我們會在本網頁發佈通知。變更不會回溯適用,並將於公布變更起十四天或更長時間後方始生效。不過,針對本服務新功能的變更,或基於法律理由而為之變更,將立即生效。如果您不同意本服務之修訂條款,則請停止使用該本服務。

第三人網站的連結 本服務或協力廠商可能會提供連結至其他網站或網路資源的連結。您可能會因此連結至其他業者經營的網站,但不表示希平方與該等業者有任何關係。其他業者經營的網站均由各該業者自行負責,不屬希平方控制及負責範圍之內。

兒童及青少年之保護 兒童及青少年上網已經成為無可避免之趨勢,使用網際網路獲取知識更可以培養子女的成熟度與競爭能力。然而網路上的確存有不適宜兒童及青少年接受的訊息,例如色情與暴力的訊息,兒童及青少年有可能因此受到心靈與肉體上的傷害。因此,為確保兒童及青少年使用網路的安全,並避免隱私權受到侵犯,家長(或監護人)應先檢閱各該網站是否有保護個人資料的「隱私權政策」,再決定是否同意提出相關的個人資料;並應持續叮嚀兒童及青少年不可洩漏自己或家人的任何資料(包括姓名、地址、電話、電子郵件信箱、照片、信用卡號等)給任何人。

為了維護 希平方 網站安全,我們需要您的協助:

您承諾絕不為任何非法目的或以任何非法方式使用本服務,並承諾遵守中華民國相關法規及一切使用網際網路之國際慣例。您若係中華民國以外之使用者,並同意遵守所屬國家或地域之法令。您同意並保證不得利用本服務從事侵害他人權益或違法之行為,包括但不限於:
A. 侵害他人名譽、隱私權、營業秘密、商標權、著作權、專利權、其他智慧財產權及其他權利;
B. 違反依法律或契約所應負之保密義務;
C. 冒用他人名義使用本服務;
D. 上載、張貼、傳輸或散佈任何含有電腦病毒或任何對電腦軟、硬體產生中斷、破壞或限制功能之程式碼之資料;
E. 干擾或中斷本服務或伺服器或連結本服務之網路,或不遵守連結至本服務之相關需求、程序、政策或規則等,包括但不限於:使用任何設備、軟體或刻意規避看 希平方 - 看 YouTube 學英文 之排除自動搜尋之標頭 (robot exclusion headers);

服務中斷或暫停
本公司將以合理之方式及技術,維護會員服務之正常運作,但有時仍會有無法預期的因素導致服務中斷或故障等現象,可能將造成您使用上的不便、資料喪失、錯誤、遭人篡改或其他經濟上損失等情形。建議您於使用本服務時宜自行採取防護措施。 希平方 對於您因使用(或無法使用)本服務而造成的損害,除故意或重大過失外,不負任何賠償責任。

版權宣告
上次更新日期:2013-09-16

希平方 內所有資料之著作權、所有權與智慧財產權,包括翻譯內容、程式與軟體均為 希平方 所有,須經希平方同意合法才得以使用。
希平方歡迎你分享網站連結、單字、片語、佳句,使用時須標明出處,並遵守下列原則:

  • 禁止用於獲取個人或團體利益,或從事未經 希平方 事前授權的商業行為
  • 禁止用於政黨或政治宣傳,或暗示有支持某位候選人
  • 禁止用於非希平方認可的產品或政策建議
  • 禁止公佈或傳送任何誹謗、侮辱、具威脅性、攻擊性、不雅、猥褻、不實、色情、暴力、違反公共秩序或善良風俗或其他不法之文字、圖片或任何形式的檔案
  • 禁止侵害或毀損希平方或他人名譽、隱私權、營業秘密、商標權、著作權、專利權、其他智慧財產權及其他權利、違反法律或契約所應付支保密義務
  • 嚴禁謊稱希平方辦公室、職員、代理人或發言人的言論背書,或作為募款的用途

網站連結
歡迎您分享 希平方 網站連結,與您的朋友一起學習英文。

抱歉傳送失敗!

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希平方 x ICRT

「Sharon Terry:我的孩子罹患連科學都無解的罕見疾病,於是我決定自己作研究」- Science Didn't Understand My Kids' Rare Disease until I Decided to Study It


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The best Christmas my children ever had was also the worst Christmas my husband and I ever had. Elizabeth, age seven, and her brother, Ian, age five, couldn't imagine why they were getting everything they wanted for Christmas. The reason Santa was so generous was because of something my husband Pat and I knew and the kids couldn't comprehend. Something that we had just learned, and it terrified us.

This was 1994 and the story actually starts a few years earlier. For a couple of years, I had noticed a rash on the sides of Elizabeth's neck that looked like prickly heat. For those same years, my father and brother both died of cancer, and I was probably overanxious about illness. The doctors assured us there was nothing wrong and I shouldn't worry, but I wasn't so sure. And so without a referral, and paying out-of-pocket, I took Elizabeth to a dermatologist. She was probably just allergic to something, but why did it appear just on the sides of her neck, this rash?

So it's two days before Christmas, 1994, and the dermatologist takes a quick look at her neck and says, "She has pseudoxanthoma elasticum." And then he shuts off the lights and looks in her eyes. It turns out, by chance, this dermatologist also trained in ophthalmology. Our lucky day. I am sick to my stomach. "Oma?" Oma's like melanoma, lymphoma—cancer. "Why are you looking in her eyes for a skin rash?" I scream and make no sound.

So there it is. Elizabeth has pseudoxanthoma elasticum, PXE for short. Questions mix with fear and erupt like bile in my throat. Why are you looking in her eyes? What do you know about this? How do you know for sure? What is the prognosis? My training in pastoral counseling did not prepare me for this.

Dr. Bercovitch tells us everything he knows about PXE. It's a rare genetic disorder, it's systemic, it's a slowly progressing, premature aging disease. It causes loose wrinkly skin in the flexor areas. It causes legal blindness, like macular degeneration, and a host of cardiovascular problems. Little is known about this disease, and some people die in their 30s, say some of the reports at the time. He then just glances at our son and says, "He has it, too." We want to flee back to the land of normal.

Two days after Christmas, researchers come from a university in Boston, and they take blood from us and our children for a research project focused on finding the gene. A few days later, researchers come from a medical center in New York and say they want blood, too. "These are children. They're five and seven years old. Don't make them face the needle twice. Go and get your share from the other researchers." They laugh, incredulous. "Share?" It is then that we learn that there is little sharing in biomedical research.

This moment, more than any other, lit a fire beneath my husband Pat and me. Pat and I went to a medical school library and we copied every article we could find on PXE. We didn't understand a thing. We bought medical dictionaries and scientific textbooks and read everything we could get our hands on. And though we still didn't understand, we could see patterns, and it became quickly apparent within a month that there was no systematic effort to understand PXE.

In addition, the lack of sharing that we experienced was pervasive. Researchers competed with each other because the ecosystem was designed to reward competition rather than to alleviate suffering. We realized that we would have to do work on this condition ourselves to find solutions for ourselves and others like us. But we faced two major barriers. The first one: Pat and I have no science background. At the time, he's the manager of a construction company, and I'm a former college chaplain stay-at-home mom—hardly the backgrounds to take the research world by storm. The second barrier: researchers don't share. People told us you can't herd cats. Well, yes you can if you move their food.

DNA and clinical data is the food. So we would collect blood and medical histories, and require that all scientists using these resources would share results with each other and with the people who donated.

Well before the internet was in common use, Pat and I established PXE International, a nonprofit dedicated to initiating research and conducting it on PXE and also supporting individuals with the disease. Using traditional media, we garnered around 100-150 people around the world who we asked, would you give us your blood, your tissue, your medical histories, your medical records? And we brought all of that together.

We quickly learned that this shared resource was not going to be enough. And so we decided we had to do hardcore bench science—hardcore research. So we borrowed bench space at a lab at Harvard. A wonderful neighbor came a couple times a week and sat with the kids from 8p.m. to 2a.m. while Pat and I extracted DNA, ran and scored gels and searched for the gene. Generous postdocs tutored us as we went along. Within a few years, we found the gene. We patented it so that it would be freely available. We created a diagnostic test. We put together a research consortium. We held research meetings and opened a center of excellence. We found more than 4,000 people around the world who had PXE, and held patient meetings and did clinical trials and studies.

Through all this, we lived with fear. Fear of the disease breathing down our neck while the clock ticked. Fear of researchers, so well credentialed and positioned in a world made for them. Fear that we were making the wrong choices. Fear that the naysayers were right and the cats would simply find a new food. But greater than all these fears was our drive to make a difference for our kids and for all those we had met along the way. And very quickly, we also realized what we were doing for one disease, we should do for all diseases.

We joined with, and I eventually led, Genetic Alliance—a network of health advocacy, patient advocacy, research and health organizations. We built scalable and extensible resources, like biobanks and registries and directories of support for all diseases. And as I learned about all those diseases and all those disease communities, I realized that there were two secrets in health care that were impacting me greatly. The first: there are no ready answers for people like my kids or all the people I was working with, whether common or rare conditions. And the second secret: the answers lie in all of us together, donating our data, our biological samples and ultimately ourselves.

There is a small groundswell of individuals who are working to change this. Citizen scientists, activists, hacks who are using crowdsourcing, do-it-yourself science are changing the game. Even President Obama and Vice President Biden are evangelists for the idea that people should be partners in research. This is a founding principle of our organization. Sure, it's really hard to discover and develop interventions and therapies. The science is hard, the regulatory regime is difficult. There are a lot of stakeholders with lots of interests and misaligned incentives like publishing, promotion and tenure. I don't fault scientists for following this path, but I challenge them and us to do this differently. To recognize that people are at the center.

Genetic Alliance has experimented in what it will take to transform these crusty systems. Our goal is to work without boundaries. That sounds abstract, but for us it's quite practical. When we're frustrated that entities won't share data—data that comes from people who gave their energy, their time, their blood and even their tears—we need to stop and ask, "How is it true that we could share, but we aren't?" We're part of this system, too. How do we make it so that people can share ideas freely? So that people can take risks and move closer to one another?

This leads to a dissolving of us versus them, not only for organizations but also for individuals. If I'm going to ask organizations or individuals to strive for these standards, then I, too, need to explore my own being and my practices. If I'm going to ask clinicians and researchers and administrators to take risks, then I, Sharon, need to take risks as well. I need to face my personal fears. My fear of not having enough impact. My fear of not leading well. My fear of not being enough.

Just before they entered their teens, our kids stopped us in our tracks and said, "You have to stop worrying about making a difference, making an impact, and instead, like us, learn to live with disease rather than fight it." I have to ask, where does all my fear come from? The kids' declaration shines a spotlight on that fear. It arises from a bedrock of love. I love Elizabeth and Ian. I love people with PXE. I love people with any disease. I love people. Some of my colleagues have discovered that it is not death we fear, it is the enormity of our loving. This expansive love opens me to great pain as I face loss.

As I discover my fear, I discover that I and all those around me have boundless capacity for love. And I also discover as I move into this fear, that I can learn many new things and find paths to things like practical solutions as well as the core of healing and health.

I don't fear fear the way I used to. In fact, lately, with enormous support from all my fellow journeyers, I notice that it's not a warning the way it used to be. I notice that instead, it's an invitation to go forward because in it lies love and the path to greater love. If I turn with gentle curiosity toward that fear, I find enormous wealth within myself and others and the ability to step into challenges that I never thought I could.

My kids are ahead of me on that path still. At ages 29 and 27, they declare they are happy and healthy despite having manifestations of PXE in their skin and eyes and arteries. And so I invite you, us, we, to turn toward our fear; to embrace the things that scare us and find the love at the center. We'll not only find ourselves there, but we'll also be able to step into the shoes of those we fear and those who fear us. If we breathe into that fear and are vulnerable with the systems and people who challenge us, our power as changemakers grows exponentially. And when we realize that working on our inner life is working on our outer life and outer work is inner work, we get down to what is real and shit gets done. There is no limit to what we can accomplish together.

Thank you.

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