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【资讯翻译】Teens Opt In to Learning About Incidental Genetic Findings

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发表于 2015-10-21 11:04:19 | 显示全部楼层 |阅读模式
Teens Opt In to Learning About Incidental Genetic Findings

The majority of teenagers say they would want to know about incidental findings discovered on genetic testing, despite the lack of medical interventions for their age group, results from a new survey suggest.

"The most compelling arguments for kids wanting to know was that it would help them to plan for their futures," said lead investigator Sophia Bous Hufnagel, MD, from George Washington University in Washington, DC.

And "whether they wanted to know or not, they still felt that planning for the future was an important benefit of genetic testing," she told Medscape Medical News here at the American Society of Human Genetics 2015.

The study involved 282 adolescents 12 to 18 years of age from three public schools in Cincinnati. The investigators gave a short presentation on genetic screening, and then asked the students to complete a multiple-choice questionnaire about the disclosure of incidental findings and their reasons for their choices.

In all, 83% of the students said they would want to know about nonactionable results, such as mutations in BRCA1 and BRCA2 genes that significantly increase the risk for breast and ovarian cancers.

Of those who wanted to know their potential genetic destinies, 38% said their primary reason was to plan for the future in regard to reproductive choices, education, careers, and relationships.

Of those who did not want to know about incidental findings, the most common rationale was that they did not want to cause stress in their families.

Nearly two-thirds of those surveyed said that they should be allowed to make the disclosure decision for themselves (19%) or with their parents (53%). A similar percentage said that children younger than 12 years should have access to incidental findings.

Children younger than 13 years were significantly less likely than older participants to want to know the results (55% vs 87%, P <. 0001).

There were no significant differences in preference by sex, race, or socioeconomic background.

Genetics Education Starts Early

Adolescents today are far more savvy about genetics than previous generations, Dr Hufnagel explained.

"Kids these days are way more aware of the implications of genetic testing than any of us were when we were growing up," she said. "I didn't start learning about this until my senior year of high school, and now these kids are exposed to it in elementary school."

Adults who undergo genetic counseling have the right to choose for themselves how much they want to know about both actionable and nonactionable findings. But for teenagers, genetic information is filtered through the adults who control the information.

Some adults argue, "let kids be kids," free from worry about a potential future medical problem they can't do anything about anyway, said Dr Hufnagel.

There is a certain wisdom in this practice, said Kelly Metcalfe, RN, PhD, from the Lawrence S. Bloomberg Faculty of Nursing at the University of Toronto, who was not involved in the study.

"I work in the breast cancer world, and we don't offer testing to anybody under the age of 18, even when we're doing multigene panels, simply because there isn't anything we can do," she told Medscape Medical News. "If we do identify a 16-year-old, for instance, with a BRCA1 or BRCA2 mutation, there's nothing we're going to do differently."

She acknowledged that occasionally a young patient will push for genetic testing, but she and her colleagues do their best to discourage it.

The combination of multigene panels and the ever-decreasing cost of sequencing is changing the landscape of genetic testing, and that has implications for the genetic counseling of teens and their families, Dr Metcalfe explained.

"Full genome sequencing is another whole kettle of fish. We're not just talking about knowing that you're from a high-risk family where there are a lot of cancers; we're now talking about learning things about Alzheimer's, and multiple sclerosis, and cardiac disease. I think it's a lot for a teenager to take on," she said.

信源地址:http://www.medscape.com/viewarticle/852808

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发表于 2015-10-21 11:16:50 | 显示全部楼层
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发表于 2015-10-21 15:25:21 | 显示全部楼层
青少年对于了解基因测试偶然发现的选择
一项新的调查结果表明,大多数青少年表示,尽管他们的年龄组很少需要医疗干预,他们仍希望了解基因检测中的偶然发现。
“对于孩子们希望了解这些发现的原因,最有信服力的论点是这些发现能够帮助他们规划自己的未来,”乔治华盛顿大学医学博士、首席研究员Sophia Bous Hufnagel如是说。
“无论他们是否想知道结果,他们都认为对未来的规划是基因检测带来的一项重要的好处。”她在2015年美国人类遗传学会上对Medscape医学新闻说道。
这项研究涉及282名12至18岁的青少年,他们来自辛辛那提的三所公立学校。研究人员对基因筛选进行了一个简短的陈述,然后要求学生完成一份关于披露偶然发现的多项选择问卷,并要求他们给出选择的原因。
最终共有83%的学生表示他们希望了解不可诉结果,例如会显著增加乳腺癌和卵巢癌患病风险的BRCA1 和BRCA2基因突变。
在那些希望了解他们潜在遗传学命运的人中,38%的人表示其主要原因是希望能够在生殖选择、教育、事业以及情感关系等方面做出对未来的规划。
而对于那些不想了解这些偶然发现的附加结果的人,其最常见的原因是他们不想在家庭中造成压力。
近三分之二的受访者表示,他们应该被允许自己(19%)或与他们的父母一起(53%)做出披露附带结果决定。在另一个问题中,关于12岁以下的儿童应该有获得附带结果的权利,也得到了相似的百分率。
年龄小于13岁的孩子显然不太可能表现出比年长的参与者更希望知道结果(55%比87%,P <.0001)。
不同性别、种族或社会经济背景的偏好并无显著差异。
遗传学教育很早就开始了
现在的青少年在遗传学方面的理解比上一代要多得多, Hufnagel博士解释说。
她说:“如今的孩子们对基因检测的含义的了解远比我们所有人在他们那么大的时候更为清楚。直到高中的高年级,我才开始学习这些知识,而现在这些孩子在小学就接触到了它们。”
接受遗传咨询的成年人有权为自己选择他们想知道多少结果,包括可控和不可控调查结果。但对于青少年来说,遗传信息是经过控制信息的成年人过滤的。
一些人认为应该“让孩子保持童真,”不去担心那些他们无论如何也无法改变的未来潜在的医学问题, Hufnagel博士说。
这种做法存在一定的智慧,多伦多大学Lawrence S. Bloomberg护理学院的Kelly Metcalfe博士说,她并没有参与这项研究。
“我从事乳腺癌相关工作,我们不对任何年龄在18岁以下的患者提供测试,甚至在我们做多基因测试面板时,因为没有什么我们可以做的,”她告诉Medscape医学新闻。“如果我们确定一个16岁患者存在例如BRCA1或BRCA2基因突变,我们要做的并没有任何不同。”
她承认可能一个年轻的病人会偶尔推动基因测试,但她和她的同事们会尽力阻止这一情况发生。
多基因面板和不断降低成本的测序的结合正在改变基因检测的现状,这也对青少年及其家庭的遗传咨询带来了影响,梅特卡夫博士解释说。
“全基因组测序也是一滩浑水。我们不只是在谈论你来自一个高危家庭,其中有很多人患有癌症,我们现在讨论的是关于阿尔茨海默氏症,多发性硬化症和心脏病的问题。“我认为一个十几岁的孩子不该承担这么多,”她说。

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 楼主| 发表于 2015-10-21 15:40:03 | 显示全部楼层
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