常见问题(常见问题)
根据我们的经验, 与会者分享了许多共同的问题, 以下是我们的回答. You may also obtain a Frequently Asked Questions brochure in 英语 or 西班牙语 at one of our 参与的位置.
有关问题及答案的pdf格式亦载于: 英语 | 西班牙语 | 阿拉伯语 | 波斯语 | 普通话 | 朝鲜文
或者您可以直接与我们联系:
- 关于你作为研究对象的权利的问题, 联系皇冠hga025大学洛杉矶分校人类研究保护计划办公室, at 310-825-5344.
- 一般性问题, or, 以了解如何浏览同意应用程序, 请致电皇冠hga025大学洛杉矶分校普遍同意小组 310-794-0981.
- 更多信息或问题，关于 ATLAS基因筛选计划，请致电 310-780-1333 或者给团队发邮件 (电子邮件保护)
什么是生物样本?
生物样本是任何体液或组织(如.g., 血, 唾液, 尿液, skin or other tissues) that may be collected when you go to the doctor or have a medical procedure. 通常，收集这些样本是为了帮助诊断或监测您的健康状况.
用完之后，剩下的任何东西都要扔掉或销毁. 如果你允许的话, these leftover materials will be sent to the UCLA Biobank for research instead of being thrown away.
什么是UCLA生物银行?
皇冠hga025大学洛杉矶分校生物银行从尽可能多的人身上收集生物样本. 然后对样本进行编码，并删除任何可以识别你的信息. 然后生物银行发送样本, 还有一些你的健康信息, 给获得批准的研究人员，他们将利用这些信息找到新的预防方法, 检测和治疗健康问题.
我的同意决定会影响我的治疗吗?
No. Your universal consent decision (opting in or out of donating your biological samples) will have no impact on your clinical care. 适用于18岁以上的患者, 如果你同意采集额外的血样和/或唾液样本, 临床工作人员需要提前知道，以便收集额外的样本. 不管你做什么决定, 它不会影响您与皇冠hga025大学洛杉矶分校健康中心的关系或您正在接受的服务.
我们为什么要多输一管血?
适用于18岁以上的患者, 多出一管血(最多2茶匙), 或者在某些情况下是唾液, provides us with enough volume for multiple research purposes and permits certain research not possible on leftover samples.
如何收集样本?
We will collect some biological samples from some of your future routine clinical lab work done at any 皇冠hga025大学洛杉矶分校健康 laboratory. 如果你允许的话, we may: 1) use leftover biological specimens from any future routine lab work done at any 皇冠hga025大学洛杉矶分校健康 laboratory, 2) collect an extra tube of 血 as part of a future 血 draw or IV placement during a routine visit, and/or 3) collect 唾液 if you are at a clinic that collects samples for precision medicine.
*您不需要接受任何额外的针刺、测试或程序.
我的样品要保存多久?
你的样品将被无限期保存.
我的样本如何用于研究?
您的样本可用于各种研究目的(例如.g.(癌症、心脏病、糖尿病)和产品开发.
例子:
- 遗传研究: 你的样本可以用来研究基因如何影响健康或对治疗的反应. 基因包含控制我们细胞和身体如何发育和工作的DNA片段. DNA密码是你从父母那里继承并传给孩子的东西. 研究人员可以使用多种方法, 包括全基因组测序, 来观察你的部分或全部DNA密码.
- 科学数据库: Researchers also put genetic and other non-identifiable information about you and your health conditions, 还有来自他们研究的信息, 进入科学数据库. 这增加了知识，可以使未来的研究发现更快地发生.
- 其他的用途: Researchers may use your samples to create new products useful for research or clinical treatment. 你的样本可能包括可以在实验室中无限生长的细胞, 称为“细胞系”,或者你的样本可以用来开发或测试新的治疗方法.
谁将对样本进行研究?
Only researchers and research projects approved by a UCLA research-review process may receive samples for research. 大多数样本将交给皇冠hga025大学洛杉矶分校的研究人员, 但我们也可以选择与其他大学的研究人员分享样本, government researchers and researchers from private companies that work on developing new tests or treatments.
用我的样本做研究，我能得到什么结果吗?
You will not get any results back unless you let us know that you want to receive genetic results. 研究界将不知道你是谁, but the UCLA Biobank will be able to work with your health care team to notify you only if there are results that may affect your care.
请知道，在结果出来之前，通常会有几个月到几年的延迟. 如果您不希望收到任何结果的通知, UCLA will publish a newsletter that provides overall information about new discoveries made from the samples. 如果有任何结果返回给你, a genetic counselor will be available to provide more information on your results either in person or over the phone.
If you or your doctor are concerned that you have a medical condition that requires genetic testing, 我们鼓励你的医生安排一个临床基因测试，以便尽快得到你的答案. 请知道，这并不能代替临床基因测试的需要.
我应该考虑经济因素吗?
You will not be charged for donating your samples, and you won’t receive any money for doing so. 如果有商业价值，它将属于皇冠hga025大学洛杉矶分校及其合作者. 如果有新产品，你将不会得到报酬, 测试或发现是对您的样本进行任何研究的结果.
谁从生物样本中受益?
你们的样本将用于推进科学发展，更好地了解特定疾病. 过去，皇冠hga025大学洛杉矶分校的一些样本已经开发出了治疗严重疾病的新方法. The research discoveries in the future may allow for more personalized therapies for patients — a primary goal of precision health at UCLA.
有任何风险吗??
没有物理风险. There is a very small chance that someone could obtain information that would connect the sample to you. 因为只有你有你独特的基因构成, 关于你祖先的信息, ethnic group or other people with your disease might be identified and connected with your sample.
There is also a small chance that information from your health records could be accidentally released. 目前, only large state and federal agencies have the ability to identify individuals just based on a complete DNA profile. 我们无法预测未来的科技会如何影响机密性.
Federal and California laws provide certain protections against discrimination based on genetic information.
有些人可能对某些研究有道德、宗教或文化方面的顾虑.
如何保护我的隐私?
UCLA will remove your name and other information that could identify you before sharing your samples for research. A list of names and matching code numbers will be kept separate from coded samples and data. 只有皇冠hga025大学洛杉矶分校的授权员工才能访问此列表. Those working on the research projects will not have access to any information that links your samples to you.
Jane Smith -> becomes -> 1493526807
样品被保存在锁着的建筑物里的锁着的冰柜里. 所有信息都保存在防火墙后面有密码保护的计算机上.
研究你的样本的研究人员不会知道你是谁. 生物银行只会给他们一个代码号码，没有任何识别信息. 皇冠hga025大学洛杉矶分校健康 and its Biobank must follow state and federal laws and UCLA policies that require protection of your information. The Biobank will only give out limited information to other collaborators and none of the information will include identifying information.
生物样本库拥有美国国立卫生研究院颁发的保密证书. This certificate prevents UCLA from sharing any information that could identify you in any civil, 刑事, 行政, 立法或其他程序，无论是在联邦, 州或地方层面.
Your privacy will always be protected whether you choose to share your leftover sample or donate an additional tube of 血 and/or 唾液 sample for research. 如果您希望我们联系您进行未来的研究, then we may contact you for other research opportunities that may or may not relate to a biological sample you may have given.
Your specimens and information about you are/is protected by a federal Certificate of Confidentiality. This means that we cannot be forced to release your specimens or information about you for any legal proceeding, 即使法庭要求.
The Certificate allows us to use your specimens and information about you for purposes of this research, 或者在法律允许的情况下为其他研究披露. The Certificate requires other researchers to also protect specimens and information we share with them.
这种保护是有限度的. 在下列情况下，本证书不保护您的信息:
1. 你或你的家人自愿分享自己的信息.
2. 您同意信息的具体发布(例如, 如果你签了雇佣合同, 保险或医疗).
3. 联邦机构对其资助的研究进行审计或评估.
如何退出UCLA生物银行?
你加入皇冠hga025大学洛杉矶分校生物库是自愿的. 如果您同意参加，但改变了主意，我们将尊重您的要求. 确保你有足够的时间仔细考虑你的决定, there will be a 10-day window from the time you sign the consent to the time your sample becomes available for researchers. 即使在10天之后，你仍然可以随时改变主意.
停止在研究中使用您的样本或健康信息, you may return to the same location where you first completed the consent to change your consent decision. 您也可以通过以下方式停止使用您的样本或数据 310-825-4136.
适用于18岁以下的患者, we can only withdraw a consent for the patient over the phone if the parent or guardian who initially completed the process is the one contacting the Biobank.
任何收到你样本的研究人员都会被要求销毁它们. 请注意，我们无法取回任何已经被研究人员使用过的样本.
有问题我该和谁联系?
任何与您作为研究对象的权利有关的问题, 联系皇冠hga025大学洛杉矶分校人类研究保护计划办公室，地址是 310-825-5344.
有关一般问题或了解如何浏览同意申请，请致电 310-794-0981.
更多信息或问题，关于 ATLAS基因筛选计划，请致电 310-780-1333 或者给团队发邮件 (电子邮件保护)